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AN INVESTIGATION OF SPEECH-LANGUAGE PATHOLOGISTS’ AND PARENTS’ PERCEPTIONS OF THE COUNSELING TECHNIQUES PROVIDED BY SPEECH-
LANGUAGE PATHOLOGISTS TO PEDIATRIC PATIENTS WITH TRACHEOSTOMIES AND THEIR FAMILIES
by Meghan Leigh Botsch
An Independent Study Thesis Presented in Partial Fulfillment of the Course Requirements for
Senior Independent Study: The Department of Communication Sciences and Disorders
March 5, 2021
Advisors: Donald M. Goldberg, Ph.D. & Joan E. Furey, Ph.D.
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ABSTRACT
The purpose of this study was to investigate the perceptions of the interventions provided
and counseling techniques used by speech-language pathologists (SLPs) to address the emotional
impact for both pediatric patients receiving tracheostomy tubes and their parents/family
caregivers. A secondary purpose was to investigate the family caregivers’ perspectives of the
counseling methods provided by SLPs to pediatric patients with tracheostomy tubes and their
families. Quantitative research methods were used to investigate SLPs’: preparation to work with
pediatric tracheostomy patients; confidence in performing both medical tasks and counseling;
frequency of performing medical tasks and counseling; and familiarity with counseling resources
specific to pediatric tracheostomy patients. The study also investigated parents’ perceptions of
how confidently and frequently their child’s SLP completed medical tasks and provided
counseling. Qualitative research methods were used to provide context and further explanations
for parental experiences working with SLPs. The results indicated that SLPs have higher
confidence in and frequency of providing informational counseling than providing personal
adjustment counseling. In addition, parents perceived SLPs to be less confident in and less
frequently providing informational and personal adjustment counseling relative to the SLPs’
ratings.
Key Words:
Tracheostomy, tracheotomy, informational counseling, personal adjustment counseling, speech-
language pathology, confidence, frequency
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ACKNOWLEDGMENTS
First, I would like to thank Dr. Goldberg for beginning me on my journey with my
Independent Study. I am incredibly grateful for your constant encouragement and excitement
through each step of this process. Especially beginning I.S. during such a chaotic time, I am
lucky to have had you as a mentor and support system for my academic work, along with my
transition into virtual learning and then back to campus. This shared experience of the pandemic
helped me form a deeper relationship with you as a professor and advisor, which I fully believe
helped propel my research further than it could have been without your help. Thank you for
being my Junior I.S. advisor, Senior I.S. advisor for the fall, and my Second Reader for the
spring.
Secondly, I would like to thank Dr. Furey for transitioning into the role as my I.S. advisor
in the spring. You came into this role with another level of energy that helped me stay
encouraged and excited to conclude my study. Thank you for your quick and diligent edits of
each draft of writing. My I.S. would be a lot more “AWK” to read without your feedback. Thank
you for spending so much time and effort working with me and my research.
I would like to give a special thank you to Tessa Hall (and Hubble) from the Writing
Center. I don’t know how you manage to make editing my I.S. for weeks on end enjoyable, but I
am so thankful that you do. Thank you for reading and re-reading every piece of my writing, but
more importantly, thank you for always making me laugh. I could not have made it through this
process without you.
Thank you also to my friends here at Wooster and at home. You all added so much love
and laughter in my life and I am so grateful for our friendships. Regardless of being on campus
together or hundreds of miles apart, I have felt connected and supported by each one of you. I
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would like to specifically thank Mila Zunich for constantly making me laugh, always being
ready for a creative walk, or having a self-care night. I couldn’t ask for a better friend to go
through all four years at Wooster with and I can’t thank you enough for your support, especially
this year.
Most importantly, I would like to thank my family for their constant love and support
throughout my time here at the College of Wooster, and especially during I.S. Thank you for the
endless phone calls, patience in reteaching me SPSS, family Zoom calls, and constant
encouragement. I would not be who I am today without all of you. I am forever thankful to be
where I am today because you all have continued to believe in me and what I can do. I love you
all so much!
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TABLE OF CONTENTS
CHAPTER I: INTRODUCTION .................................................................................................... 1
Purpose Statement ....................................................................................................................... 2
Rationales……… ........................................................................................................................ 2
Definitions…….. ......................................................................................................................... 4
Background……. ......................................................................................................................... 5
Etiologies of Pediatric Patients Requiring a Tracheostomy Tube ........................................... 6
Surgical Procedure for Tracheotomy ....................................................................................... 6
Variations of Tracheostomy Tubes ......................................................................................... 7
Medical Sequelae for Tracheotomy ......................................................................................... 8
Communication Methods ........................................................................................................ 8
Role of the Speech-Language Pathologist (SLP) .................................................................... 9
Description of Method ............................................................................................................... 10
Conclusion…….. ....................................................................................................................... 10
CHAPTER II: LITERATURE REVIEW .................................................................................. 12
Communication by Patients with Tracheostomy Tubes ............................................................ 13
Manipulation of Tracheostomy Tube .................................................................................... 14
Speaking Valves .................................................................................................................... 15
Augmentative and Alternative Communication (AAC) ........................................................ 16
Parental Experiences with a Child Post-Tracheotomy .............................................................. 17
Decision to Perform Tracheotomy ........................................................................................ 19
Parental Adjustment into a Medical Role .............................................................................. 20
Social Isolation ...................................................................................................................... 21
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Role of the Speech-Language Pathologist (SLP) ...................................................................... 22
SLP Preparation ..................................................................................................................... 24
Speech-Language Pathologist (SLP) Treatment ................................................................... 25
Evaluation and Assessment ................................................................................................... 25
Therapy .................................................................................................................................. 26
Counseling Methods .................................................................................................................. 29
Conclusion…….. ....................................................................................................................... 32
CHAPTER III: METHOD ......................................................................................................... 35
Justification of Method .............................................................................................................. 35
Participants……. ....................................................................................................................... 36
Instruments……. ....................................................................................................................... 39
Procedures…….. ....................................................................................................................... 41
CHAPTER IV: RESULTS AND DISCUSSION ...................................................................... 43
Results………… ....................................................................................................................... 44
Speech-Language Pathology (SLP) Training ........................................................................ 44
Confidence in Performing Medical Tasks and Counseling ................................................... 46
SLPs’ Confidence in Performing Medical Tasks and Counseling .................................... 47
SLPs’ Confidence in Performing Medical Tasks .......................................................... 47
SLPs’ Confidence in Providing Informational Counseling ........................................... 48
SLPs’ Confidence in Providing Personal Adjustment Counseling ............................... 50
Comparison of SLPs’ Confidence in Providing Informational Counseling to Personal Adjustment Counseling. ................................................................................................ 52
SLPs’ Confidence and Parents’ Perception of SLP Confidence in Counseling ................ 53
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SLPs’ Confidence and Parents’ Perception of SLP Confidence in Informational Counseling. .................................................................................................................... 53
SLPs’ Confidence and Parents’ Perception of SLP Confidence in Personal Adjustment Counseling ..................................................................................................................... 55
Frequency of Performing Tasks ............................................................................................ 58
SLPs’ Frequency of Counseling ........................................................................................ 58
SLPs’ Frequency of Providing Informational Counseling. ........................................... 59
SLPs’ Frequency of Providing Personal Adjustment Counseling. ................................ 61
Comparison of SLPs’ Frequency in Providing Informational Counseling to Personal Adjustment Counseling. ................................................................................................ 64
SLPs’ Frequency of Counseling Patients in Relation to Confidence Levels of Counseling Methods. ..................................................................................................... 64
Parents’ Perception of how Frequently SLPs Provide Counseling ................................... 65
Parents’ Perception of how Frequently SLPs Provide Informational Counseling. ....... 65
Parents’ Perceptions of how Frequently SLPs Provide Personal Adjustment Counseling. .................................................................................................................... 66
SLPs’ Frequency and Parents’ Perception of how Frequently SLPs Provide Counseling 67
SLPs’ Frequency and Parents’ Perception of how Frequently SLPs Provide Informational Counseling .............................................................................................. 67
SLPs’ Frequency and Parents’ Perception of how Frequently SLPs Provide Personal Adjustment Counseling. ................................................................................................ 68
Discussion………...................................................................................................................... 68
Speech-Language Pathology (SLP) Training ........................................................................ 68
Confidence in Performing Medical Tasks and Counseling ................................................... 71
SLPs’ Confidence in Performing Medical Tasks and Counseling .................................... 71
SLPs’ Confidence in Performing Medical Tasks. ......................................................... 72
SLPs’ Confidence in Providing Informational Counseling. .......................................... 72
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SLPs’ Confidence in Providing Personal Adjustment Counseling. .............................. 74
Comparison of SLPs’ Confidence in Providing Informational Counseling to Personal Adjustment Counseling. ................................................................................................ 75
SLPs’ Confidence and Parents’ Perception of SLP Confidence in Counseling ................ 76
SLPs’ Confidence and Parents’ Perception of SLP Confidence in Informational Counseling. .................................................................................................................... 76
SLPs’ Confidence and Parents’ Perception of SLP Confidence in Personal Adjustment Counseling. .................................................................................................................... 78
Frequency of Performing Tasks ............................................................................................ 79
SLPs’ Frequency of Counseling ........................................................................................ 80
SLPs’ Frequency of Providing Informational Counseling. ........................................... 80
SLPs’ Frequency of Providing Personal Adjustment Counseling ................................. 82
Comparison of SLPs’ Frequency in Providing Informational Counseling to Personal Adjustment Counseling. ................................................................................................ 84
SLPs’ Frequency of Counseling Patients in Relation to Confidence Levels of Counseling Methods. ..................................................................................................... 85
Parents’ Perceptions of how Frequently SLPs Provide Counseling .................................. 86
Parents’ Perception of how Frequently SLPs Provide Informational Counseling. ....... 86
Parents’ Perceptions of how Frequently SLPs Provide Personal Adjustment Counseling. .................................................................................................................... 87
SLPs’ Frequency and Parents’ Perception of how Frequently SLPs Provide Counseling ........................................................................................................................................... 89
SLPs’ Frequency and Parents’ Perception of how Frequently SLPs Provide Informational Counseling. ............................................................................................. 89
SLPs’ Frequency and Parents’ Perception of how Frequently SLPs Provide Personal Adjustment Counseling. ................................................................................................ 90
CHAPTER V: CONCLUSION ................................................................................................. 92
Major Conclusions ..................................................................................................................... 92
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Implications of the Research Findings ...................................................................................... 93
Limitations…….. ....................................................................................................................... 94
Recommendations for Future Research ..................................................................................... 96
Final Thoughts…. ...................................................................................................................... 98
REFERENCES… ...................................................................................................................... 99
APPENDIX A: SURVEY ITEM: Q10 Medical Condition .................................................. 108
APPENDIX B: SLP SURVEY INSTRUMENT ................................................................... 110
APPENDIX C: PARENT SURVEY INSTRUMENT .......................................................... 153
APPENDIX D: PARENT INTERVIEW MODEL QUESTIONS ........................................ 188
APPENDIX E: HUMAN SUBJECTS RESEARCH COMMITTEE (HSRC) APPROVAL 190
APPENDIX F: RECRUITMENT MESSAGES .................................................................... 191
APPENDIX G: SURVEY ITEM: Q54 SLPs’ Favorite Open Ended Question .................... 192
APPENDIX H: SURVEY ITEM: Q48 Experiences with SLPs ........................................... 193
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Table of Tables
Table 1: SLPs’ Graduate Academic Preparation .......................................................................... 45
Table 2: SLPs Frequency of Implementing Informational Counseling Techniques in Therapy .. 59
Table 3: SLP Frequency of Implementing Personal Adjustment Counseling Techniques in Therapy .......................................................................................................................................... 62 Table 4: Parents’ Perception of how Frequently their Child’s SLP Provided Informational Counseling ..................................................................................................................................... 66 Table 5: Parents’ Perception of how Frequently their Child’s SLP Provided Personal Adjustment Counseling ..................................................................................................................................... 67
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Table of Figures
Figure 1: Primary work site of SLPs ........................................................................................... 37
Figure 2: Parent/caregiver relationship to the child with a tracheostomy tube ............................ 38
Figure 3: Current age of child with a tracheostomy tube ............................................................. 38
Figure 4: Proportion of children reporting medical conditions requiring tracheostomy tubes .... 39
Figure 5: How SLPs obtained experience to work with pediatric tracheostomy patients ............ 46
Figure 6: SLPs’ confidence in performing medical tasks for pediatric tracheostomy patients .... 48
Figure 7: Confidence in Informational Counseling with respect to academic preparation .......... 50
Figure 8: Confidence in Personal Adjustment Counseling with respect to academic preparation ....................................................................................................................................................... 52 Figure 9: Mean confidence ratings of SLPs delivering informational counseling and parents’ perception of their SLP’s comfort in delivering informational counseling ................................... 54 Figure 10: Mean confidence ratings of specific informational counseling techniques used by SLPs and perceived by family caregivers ..................................................................................... 55 Figure 11: SLPs’ confidence in delivering personal adjustment counseling and parent’s perception of their SLP’s comfort in delivering personal adjustment counseling ........................ 56 Figure 12: Confidence of specific personal adjustment counseling techniques used by SLPs and perceived by family caregivers ...................................................................................................... 58 Figure 13: Frequency in providing Informational Counseling with respect to academic preparation ..................................................................................................................................... 61 Figure 14: Frequency of providing Personal Adjustment Counseling with respect to academic preparation ..................................................................................................................................... 64
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CHAPTER I: INTRODUCTION
Tracheotomies have been performed since the 17th century and while there have been
some adjustments and advancements in the technique and technology, the surgical procedure has
remained relatively constant for the past 200+ years (Zeitels, Broadhurst, Akst, & Lopez-Guerra,
2008, p. 6). The history and amount of practice behind tracheotomies should result in high
success levels and essentially perfect outcomes. Tracheotomies, however, are considered a risky
surgery, while the medical criteria for requiring a tracheotomy continue to increase. Due to the
high risk and frequency of complications, this surgical procedure requires a substantial amount
of postoperative care and support from medical professionals and the child’s caregiver(s).
These risks are further complicated for a medically fragile child needing a life-saving
procedure because the surgery involves complications 70% of the time and a mortality rate of
4% (Rudnick & Mitchell, 2009, p. 161). To increase the stress factor for a parent, consider the
implications that a “mean hospital stay following tracheostomy in an infant or child is 50 days
with an average cost of $200,000” to maintain the child’s life (Yellon, 2008, p. 69). The financial
implications among other reasons cause many families to push for an earlier discharge from the
hospital in order to return back into the home environment. In addition, tracheostomies require
close relationships with medical professionals. While these medical professionals are responsible
for providing various services to the patient, including therapy and counseling, these services
should also be provided for the family. As these pediatric patients transition out of the hospital
and into a natural, home setting, parents often must transition into a medical role to provide
postoperative care for their child, increasing stress levels for the family.
Speech-language pathologists (SLPs) are non-medical professionals that will remain in
the patient and family’s life throughout the patient’s journey in the hospital through achieving
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long-term objectives. Because of the consistency and presence in the family’s journey, it is in the
SLP’s best interest to be familiar with various techniques to address the emotional impact of a
pediatric patient receiving a tracheostomy tube and understand the ways in which the parents
perceive these techniques. This chapter will outline the purpose of this study, indicate both
scholarly and practical rationales, review important terms, provide background information, and
discuss the method of how data will be collected.
Purpose Statement
The purpose of this study is to investigate the interventions provided and the counseling
techniques use d by speech-language pathologists (SLPs) to address the emotional impact for
both pediatric patients receiving tracheostomy tubes and their parents/family caregivers. A
secondary purpose is to investigate caregivers’ perspectives of the counseling methods provided
by SLPs to pediatric patients and their families, including bibliotherapy, educational products,
group therapy, and use of open-ended questions.
Rationales
This study contains both scholarly and practical rationales. The first scholarly rationale is
the limited research regarding the emotional impact of children receiving tracheostomy tubes on
pediatric patients themselves, and their family caregiver(s). Hopkins, Wetstone, Foster, Blaney,
and Morrison (2009) researched the impact of a tracheotomy on the quality of life of pediatric
patients and their families, as viewed by their caregiver, focusing on stress and anxieties related
to management of the tracheostomy tube (p. 15). Hopkins and colleagues (2009) reported that the
family caregivers perceived their child with a tracheostomy tube to be well adjusted to his/her
disability and technology, while caregivers of children with tracheostomy tubes indicated a
greater negative impact on their quality of life (pp. 18-19). Research, however, has not yet
3
investigated the involvement of speech-language pathologists (SLPs) in addressing the emotional
impact of tracheostomy tubes on the quality of life for pediatric patients with tracheostomy
tubes. Therefore, this study will investigate the interventions and techniques SLPs utilize in order
to address the various emotional impacts of pediatric patients receiving a tracheotomy.
The second scholarly rationale is related to the extent of informational and personal
adjustment counseling that tracheostomy patients receive in a hospital setting. Past research has
shown that patients receive insufficient and inconsistent informational counseling by hospital
staff members, leading to negative and traumatic experiences while they are in the hospital
(Sherlock, Wilson, & Exley, 2009, p. 504). However, research by Sherlock and colleagues had a
focus on the informational counseling and did not address personal adjustment counseling
methods provided to their adult tracheostomy patients. In addition, there is limited research on
the informational and personal adjustment counseling methods provided to pediatric
tracheostomy patients. Therefore, this study will investigate both the informational and personal
adjustment counseling techniques SLPs provide to pediatric tracheostomy patients and to their
families in hospitals.
A rationale that combines both scholarly and practical aspects is related to the lack of
academic preparation from graduate programs in incorporating counseling within therapy
sessions. Research has indicated that there is minimal focus on counseling methods and
techniques within graduate training programs, resulting in many clinicians, especially new
clinicians lacking confidence in the integration of counseling within their therapy sessions with
clients (Phillips & Mendel, 2008, p. 45). Specifically, a 2008 survey by these authors noted that
only 12% of surveyed clinicians felt adequately prepared to counsel clients after receiving their
training from their respective graduate programs (p. 45). A similar lack of training for graduate
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students was demonstrated in the research of Victorino and Hinkle (2019), who described the
limited information regarding counseling skills utilized by SLPs and the difficulty in assessing
the amount and quality counseling skills within therapy sessions (p. 110). It was argued that the
main objective of therapy focuses on communication skills with minimal emphasis on
counseling. In addition, it is difficult to analyze the quality of counseling within therapy sessions
because “direct observation and measurement of counseling skills is challenging” (p. 110). While
research has noted the difficulty in assessing and implementing counseling within therapy for
SLPs, research has not yet investigated the effectiveness and quality of counseling for the
“niche” sample population of SLPs working with pediatric clients with tracheostomy tubes and
their families. A purpose of this study will be to investigate the implementation of counseling
within therapy sessions for pediatric patients with tracheostomy tubes.
A practical rationale is the benefits SLPs can gain from understanding the emotional
impact of pediatric patients requiring tracheostomy tubes. It is necessary to understand the
importance of both informational counseling and personal adjustment counseling in order to
address the patient’s transition from using this technology in a hospital setting to using the
technology in the home and social settings. As this is a specialized population that typically
requires speech-language therapy, SLPs can benefit from gaining knowledge about various
therapy techniques in order to address the emotional impact of tracheostomy tubes for these
patients and their families.
Definitions
Several terms must be defined in order to fully understand this study. A tracheotomy
refers to the surgical procedure of receiving a tracheostomy tube. This procedure is utilized in
order to “quickly relieve upper airway obstruction due to infections processes” and more
5
commonly used for “premature infants who require prolonged ventilatory support or because of
failure of extubation secondary to congenital or acquired airway abnormalities” (Rudnick &
Mitchell, 2009, p. 159). Similarly, a tracheostomy “refers to the physical hole in the trachea (or
the tube placed through it)” (p. 159). A tracheostomy is placed through two or three tracheal
rings at the second, third, and fourth tracheal rings, which lie below the larynx and vocal folds
(p. 161). Because the tracheostomy is physically placed below the larynx, a disruption in verbal
communication results. As a common etiology for requiring a tracheostomy tube, it is important
to understand the term pulmonary hygiene. Pulmonary hygiene, or previously referred to as
pulmonary toilet, refers to procedures used by individuals who are unable to “cough and swallow
to clear secretions from the upper airway, chronically aspirate, and cannot maintain an open
airway” (Abraham, 2018, para. 6). Providing services to individuals with tracheostomy tubes
falls under the ASHA Scope of Practice of a speech-language pathologist (SLP), a professional
who will be further described in the background section to follow. Finally, the term caregiver in
this study will refer to any parent, family member, or legal guardian involved in caring for a
child with a tracheostomy tube.
Background
This section will discuss various etiologies of requiring a tracheotomy, the surgical
procedure along with the medical sequelae of receiving a tracheotomy, and various forms of
communication methods utilized by individuals with a tracheostomy tube in place. Finally, this
section will also discuss the role of the SLP in providing services to pediatric patients with
tracheostomy tubes, including informational and personal adjustment counseling methods that
might be used.
6
Etiologies of Pediatric Patients Requiring a Tracheostomy Tube
Tracheotomies can be performed as emergency measures or formally completed as an
elective surgical procedure in the hospital. Emergency tracheotomies may be performed as a
“lifesaving measure… and a formal tracheostomy carried out when the patient’s condition has
stabilized” (Yellon, 2008, p. 74). This study will focus on formal tracheotomies, which are
performed in the pediatric population, usually under one year of age, for one of three reasons.
First, the most common etiology for a pediatric patient is prolonged ventilator dependence
(Rudnick & Mitchell, 2009, p. 160). The increased survival rate of premature infants increases
potential airway abnormalities, resulting in more infants to become ventilator dependent. A
tracheostomy is recommended for these premature infants who are unable to tolerate a safe
extubation from his or her ventilator for a variety of reasons (p. 160). Second, pediatric patients
who suffer from upper airway obstruction can result in said individual requiring a tracheostomy
tube. Finally, some neurological conditions require pulmonary hygiene procedures, which can
result in the need for a tracheostomy tube. In these latter cases, tracheostomy tubes are utilized to
“assist with ventilation, prevent chronic aspiration, or facilitate pulmonary toilet” (p. 160).
Surgical Procedure for Tracheotomy
Preoperative planning for a tracheotomy is important to determine the likelihood of
success of the tracheostomy based on the individual’s anatomy (Yellon, 2008, p. 69). The
surgical procedure begins by using an endotracheal tube with a rigid bronchoscope to “secur[e]
the airway” during the surgery (p. 70). Positioning the individual using a shoulder roll will better
expose the neck to allow the surgeon to make a small incision beneath the cricoid cartilage,
remove extra fat to allow better visualization, and the midline avascular muscular raphe can then
be divided to expose the anterior tracheal wall (Rudnick & Mitchell, 2009, p. 161). A vertical
7
incision is made through two or three tracheal rings and silk or polypropylene structures are
placed on both sides of the vertical incision in the trachea as a form of guidance in finding the
tracheostomy incision position for later tube changes (p. 161). The endotracheal tube is slowly
pulled to the level right above the incision until the tracheostomy is inserted and secured through
traction sutures (Yellon, 2008, p. 71).
Variations of Tracheostomy Tubes
Tracheostomy tubes vary in relation to their inner diameter, length, presence of cuff, and
valves. The tracheal tube should “fill two-thirds of the tracheal space,” but should fill a greater
amount of the tracheal space if the pediatric individual uses a ventilator or requires suctioning
(Kertoy, 2002, p. 3). The presence of a single or double cannula will impact the diameter of the
tracheal tube. A single cannula is more beneficial for individuals in need of ventilatory
assistance, while a double cannula is more beneficial for individuals who do not utilize
ventilators. The outer cannula maintains the tracheostomy stoma, while the inner cannula is not
permanent in order to allow for removal and cleaning (Molnar, n.d., para. 2). Tracheostomy
tubes vary in length and “should lie 7-20 mm proximal to the tracheal carina” (Rudnick &
Mitchell, 2009, p. 161). Tracheostomy tubes may be cuffed or uncuffed. Cuffed tubes reduce the
likelihood of air leakage when using a ventilator (Rudnick & Mitchell, 2009, p. 161). Inflated,
cuffed tubes allow air to flow through the lungs, while creating a seal from allowing air to flow
through the upper airway (Kertoy, 2002, p. 3). Finally, some individuals with tracheostomy tubes
are able to tolerate a speaking valve to promote speech sound production (Rudnick & Mitchell,
2009, p. 161).
8
Medical Sequelae for Tracheotomy
There are various complications that arise from the presence of a tracheostomy tube
including, but not limited to, swallowing problems, obstruction of the tracheostomy tube, and
accidental decannulation. Insertion of the tracheostomy tube causes a “partial fixation of the
vertical motion of the larynx,” which may lead to dysphagia in some individuals (Yellon, 2008,
p. 77). The issues may be reduced by a cuffed tracheostomy tube and frequent suctioning. A
tracheostomy tube must not be too short, or too long in order to avoid being obstructed by the
posterior or anterior wall of the trachea (pp. 77-78). The tube may also become obstructed by
plugging of the tube, which can be reduced by frequent suctioning and humidified air (p. 78).
Accidental decannulation may occur when the tracheostomy tube becomes dislodged from the
tracheostomy, which has been found to be the most dangerous within the first five days after
surgery (p. 78).
Communication Methods
Individuals who receive tracheostomy tubes may become aphonic, or lose their ability to
produce speech sounds because the tracheostomy tube is placed below the larynx and interferes
with the airflow to the vocal folds (Kazandjian & Dikeman, 2008, p. 188). Ability for airflow to
reach the vocal folds to phonate, or produce speech sounds, is largely dependent on the size of
the inner diameter and the presence of an inflated cuff. Communication methods for individuals
with tracheostomy tubes include, but are not limited to one-way speaking valves, manipulation
of the tracheostomy tube, and/or the use of Augmentative or Alternative Communication (AAC)
devices. One-way speaking valves are attached to the 15-mm hub of the tracheostomy tube
protruding from the individual’s neck (p. 195). The valve directs airflow back through the
tracheostomy tube during inspiration but closes and redirects airflow to the upper airway system
9
and to the vocal folds during expiration (p. 195). The redirection of air to the vocal folds allows
the individual to phonate typically. However, it is necessary for the individual to be able to
tolerate cuff deflation or have a cuffless tube in order to use a one-way speaking valve.
Manipulating a tracheostomy tube involves a deflated cuff, which the individual with the
tracheostomy tube may or may not be able to tolerate. The deflated cuff gives the individual
“some control over the upper airway… and tolerate occlusion of the tracheostomy tube optimally
after full cuff deflation” (p. 192). Manipulating the tube through finger occlusion gives the
individual more control over the upper airway system and the patient may be able to utilize his or
her vocal folds in order to phonate. Finally, some individuals who are unable to effectively use
verbal communication may utilize Augmentative or Alternative Communication (AAC) devices.
These devices can vary “depending on the patient’s cognitive communication status as well as
his or her physical motor ability” (p. 208). These devices can range from picture boards to word
phrase boards or electronic communication devices with speech synthesis, often under the
guidance of a speech-language pathologist.
Role of the Speech-Language Pathologist (SLP)
Providing evaluations and therapy to individuals with a tracheostomy tube ideally makes
use of an interdisciplinary approach, in order to provide the patient with a variety of
professionals’ knowledge and practices. As detailed in the American Speech-Language-Hearing
Association’s (ASHA, 2020) Scope of Practice for SLPs includes, but is not limited to the:
screening, assessment, diagnosis, and treatment of persons with swallowing and/or
communication disorders related to artificial airways, including tracheostomies, with and
without ventilator dependence. The professional roles and activities in speech-language
10
pathology include clinical/educational services (diagnosis, assessment, planning, and
treatment), advocacy, administration, and research. (para. 3)
When providing services to pediatric patients with tracheostomy tubes, ASHA has noted
the importance of “providing ongoing assessment with attention to parent/caregiver experience,
including caregiver stress, comfort during interaction, and ability to facilitate positive cognitive
communication development” (ASHA, 2020, para. 45). The relationship with the patient’s
caregiver includes both informational and personal adjustment counseling.
Description of Method
This study will primarily utilize a quantitative research method using online surveys in
order to assess counseling methods speech-language pathologists (SLPs) use as a means of
addressing the emotional impact on a pediatric patient receiving a tracheostomy tube and their
family. A second survey will also investigate the family caregivers’ perspective of these
counseling methods. This study will also incorporate a qualitative research method approach,
further interviewing parents of pediatric tracheostomy patients who are interested in expanding
on the survey or explaining their experiences. Experienced SLPs providing speech-language
therapy to pediatric patients with tracheostomy tubes will be surveyed along with patients’
caregivers.
Conclusion
This chapter provided the purpose of this study, indicated both scholarly and practical
rationales, defined important key terms, reviewed background information, and briefly discussed
the method of how data will be collected. This study will investigate the counseling techniques
SLPs utilize in order to address the emotional aspect of a pediatric patient receiving a
tracheostomy tube, while also investigating the caregivers’ perspectives of these techniques.
11
The emotional impact of a child receiving a tracheotomy may have a significant impact
on the quality of life of the both child and the family caregiver. While receiving a tracheostomy
tube has major health and financial implications, the caregiver often must transition into a
medical role as the child returns to home life. As described by Hopkins et al., (2009) “caring for
a tracheostomized child has far reaching effects on the caregiver, adversely affecting health,
emotional well-being, sleep, relationships and family life in the majority” (p. 18). In order to
address the emotional impact of a child who has received a tracheotomy, SLPs, as a non-medical
professional involved in providing services to these individuals and their caregivers, will benefit
from understanding the techniques that can be utilized to most effectively address this impact
and best understand how these techniques are perceived by the caregiver. The following chapter
will review previous scholarly research in order to provide a foundation for this study.
12
CHAPTER II: LITERATURE REVIEW
While the surgical procedure for a tracheotomy has remained relatively constant for over
200 years, the indications for the surgery have changed. As medical advancements have
increased, “tracheotomy has evolved from an acute life saver to an adjunct in treating infants and
children with chronic underlying disease” (Resen, Grønhøj, & Hjuler, 2018, p. 807). In addition,
pediatric patients who undergo a tracheotomy are becoming younger. In fact, the majority of
pediatric patients are less than a year old (Kobak, 2020, slide 5). The early age at which many
undergo the surgical procedure may have major impacts on parental experiences, making the
interactions with medical professionals and counseling methods provided incredibly important.
Due to the role of the speech-language pathologist (SLP) in providing therapy to these
children with tracheostomies, including counseling needs, the purpose of this study is to
investigate the interventions provided and the counseling techniques used by SLPs to address the
emotional impact for pediatric patients receiving tracheostomy tubes and their parents/family
caregivers. A secondary purpose of this study is to investigate caregivers’ perspectives of the
counseling methods provided by SLPs to pediatric patients and their families, including
bibliotherapy, educational products, group therapy, and use of open-ended questions.
In order to fully understand the importance of the SLP’s role in the lives of pediatric patients
with tracheostomies, along with their families, it is first important to understand the existing
literature. This chapter will review previous research examining the various communication
methods used by pediatric patients with tracheostomies, parental experiences, and the SLP’s role
in providing therapy, counseling, and other clinical services.
13
Communication by Patients with Tracheostomy Tubes
Pediatric patients with tracheostomies typically require assistance in communication due
to the air flow bypassing the vocal folds, preventing phonation required for speech. In a clinical
forum conducted by Woodnorth (2004), the researcher noted while there may be some air
leakage from the tracheostomy tube that is able to pass through the vocal tract, there may not be
adequate air flow “to achieve the driving force necessary for normal voice production” (p. 364).
Rather, the cannulation, or presence of the tracheostomy tube in the trachea, impacts the ability
to phonate or vocalize. Cannulation during the period of early speech sound development
physically inhibits vocalizations, strongly increasing the likelihood of speech production delays
in tracheotomized children due to their inability to babble and vocalize (Cho Lieu, Muntz, Prater,
& Stahl, 1999, p. 202).
In order to communicate in the presence of a tracheostomy tube, there are two
overarching ways to achieve oral communication: manipulation of the tracheostomy tube and
usage of a one-way speaking valve. For non-vocal or aphonic pediatric patients, the usage of
Augmentative and Alternative Communication (AAC) devices is another option used to promote
communication. The SLP will often provide guidance through evaluations and assessments in
determining the most effective mode of communication for the child, with regard for “the
cognitive, physical, and medical requirements for any communication system or device”
(Woodnorth, 2004, p. 366). It should also be noted that communication methods may vary
throughout the time of cannulation. In addition, because this study focuses on counseling
methods with relation to communication, this study does not provide an extensive list of
communication options for individuals with tracheostomy tubes. For more information regarding
other possible communication options and the effectiveness of increasing communication, see
14
ten Hoorn, Elbers, Girbes, and Tuinman (2016) Communication with conscious and
mechanically ventilated critically ill patients: A systematic review.
Manipulation of Tracheostomy Tube
One method to achieve oral communication is through manipulation of the tracheostomy
tube. Tracheal occlusion (closing) with a finger or digital occlusion, is one method to increase
oral communication. This is achieved by placing a gloved finger over the fully deflated or
cuffless tracheostomy tube as the patient exhales to “redirect air to the upper part of the airway
and allow the air to pass through the vocal cords” (Morris, Bedon, McIntosh, & Whitmer, 2015,
p. 18).
A second method of manipulating the tracheostomy tube may include utilizing the air that
leaks up through the trachea around the deflated or cuffless tracheostomy tube. Woodnorth’s
research in 2004 indicated that an adequate amount of air leakage around a fully deflated the
cuff, may allow for speech sound production (p. 365). The speech sound production may be
“soft” and only produced in short time frames or periods. In addition, children may learn to drop
their chin as a way to increase the potential air leakage that is able to pass through the trachea as
a means of utilizing air leakage as a method of communication (Kobak, 2020, slide 26). This
method of manipulation may negatively impact pragmatic social skills, however, as the child is
typically not able to make eye contact while communicating, in this “dropped chin” position.
While manipulation of the tracheostomy tube may be a potential communication method,
it is not commonly used, especially for young children because this method of manipulation
tends to increase anxiety and discomfort in patients due to the cuff deflation. Manipulation of the
tracheostomy through finger occlusion, however, is a more commonly utilized method in
assessing the client’s ability to tolerate a speaking valve in the future (Morris et al., 2015, p. 17).
15
Speaking Valves
Cho Lieu and colleagues (1999) investigated tracheostomy tubes on spoken language
development for pediatric patients (pp. 201-202). Due to cannulation impacting early speech
sound development, these researchers have noted the importance for medical professionals to
attempt transitioning the child into earlier use of speaking valves in order to allow for
vocalization practice. While Cho Lieu and colleagues (1999) noted that the comorbidity of past
medical conditions (e.g., upper airway abnormalities, lower airway disease, or prematurity) may
also impact the communication development in children with tracheostomy tubes, professionals
should understand the importance of exploring possibilities in promoting spoken language
development and learning oral motor skills via the use of speaking valves, if desired by the
family (pp. 201-202). In a systematic review completed by O’Connor, Morris, and Pratz (2019),
past studies indicated that speaking valves have additional “improvements in ventilation and
ventilation distribution, olfaction, and secretion management,” in addition to the improvements
of increased ability in oral communication (p. 363). Research by Buswell, Powell, and Powell
(2017), noted however, that pediatric patients with “minimal air leakage around the tracheostomy
tube and/or a restricted suprastomal airway, may not tolerate a one-way valve, as they are unable
to exhale adequately with the valve on” (p. 941). While not all pediatric patients can tolerate a
speaking valve, research by Buswell and colleagues discovered adaptions made to the Passy-
MuirÒ speaking valve, by drilling one or two holes in the valve, resulted in an increase in its
toleration by 41% (Buswell et al., 2017, p. 943).
There are a variety of designs for one-way speaking valves, however, the Passy-MuirÒ
speaking valve (PMV) remains the only closed-position design, which allows the valve to be
closed at rest and open during inspiration. Due to the closed-position design, the PMV is the
16
most commonly used speaking valve and apparently the only speaking valve that has been
studied on pediatric patients (Zabih et al., 2017, p. 1599). These authors noted that there should
be a gradual increase of tolerance for the PMV because “patients may initially experience
increased coughing due to restoration of a closed respiratory system, which re-establishes
subglottic pressure and normalizes exhaled airflow in the oral/nasal chambers” (Hofmann,
Bolton, & Ferry, 2008, p. 83). The pediatric patient and family members will ideally work with a
trained SLP to increase consistency of use and tolerance of the PMV. Many tracheostomy
patients may benefit from AAC devices prior to consistent usage of the PMV as a temporary
means of communication.
Augmentative and Alternative Communication (AAC)
AAC devices may also be used as a communication method for tracheostomy patients
who are aphonic or unable to effectively communicate while cannulated with the tracheostomy
tube. In the hospital, an SLP may recommend an AAC device or adjust an AAC device to
accommodate “the changes in positioning, physical access, and mental alertness associated with
the hospital experience,” which “often makes communication access difficult” (Santiago &
Costello, 2013, p. 103). The selection of an AAC device will be dependent on the cognitive and
physical abilities of the tracheostomy patient. While “effective communication between the
patients and their providers across healthcare settings has been identified as a key factor in
patient safety, satisfaction, and overall quality of care,” it is important for all patients to have
communicative abilities with those in their community to improve quality of life (Santiago et al.,
2019, p. 1).
For individuals who are unable to tolerate a speaking valve or another oral
communicative method, AAC devices can provide communication through an array of high-
17
technology, low-technology, aided, or unaided device options. In the 2019 study by Santiago and
colleagues, the researchers determined that for the majority of pediatric tracheostomy patients
who underwent consultations regarding AAC devices prior to the tracheotomy, all studied
patients ultimately received adjustments to their AAC devices to accommodate the hospital
environment (p. 4). In addition, adjustments or the use of AAC devices may be used in aphonic
pediatric patients “to enhance overall development, expressive communication, receptive
communication, emotional wellbeing, and participation in care” (p. 6).
Communication, whether through the use of technology or through vocalizations,
arguably has a positive effect on emotional well-being, for both the client and their family.
Specifically, the ability for a caregiver to bond with his or her child relies on the ability to
communicate. “When an infant or toddler is unable to produce vocalizations, the quality of the
caregiver-child interaction may be compromised” (Hofmann et al., 2008, p. 78). Regardless of
method of communication, the ability to interact and communicate with one’s child will impact
the parental experience. Furthermore, the child’s experiences and language development will
have a major impact for the quality of the caregiver-child interactions.
Parental Experiences with a Child Post-Tracheotomy
Once a tracheotomy has been surgically completed on a pediatric patient, not only the
child, but also the caregivers must transition into a variety of new roles in order to adjust their
intensive daily routines to ensure the safety of the child. While their child may experience longer
life expectancy due to the potentially life-saving procedure, tracheotomies often are associated
with “long-term implications for the child’s quality of life, caregiver burden, and caregiver’s
quality of life” (Nageswaran, Golden, Gower, & King, 2018, p. 354).
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In a literature review by Flynn, Carter, Bray, and Donne (2013), parental experiences
were evaluated after their child had been tracheotomized (p. 1633). Researchers utilized previous
studies in order to fully analyze parental experiences, in which they narrowed their search from
442 articles down to 10, emphasizing the key terms “parental attitude, medically fragile,
caregiver burden” (p. 1631). Findings indicated three main themes from parental experiences:
caregiving experiences, social experiences, and experiences of medical services. More
specifically, after a child was discharged from the hospital, researchers found that for many
parents and families, their “medical” role in the child’s life increased dramatically. Due to this
increase in parental responsibility, parents stated that it was important to have access to medical
professionals who had a relationship with their child. Parents reported that these professionals
should be available to provide guidance after the child is discharged from the hospital to help the
family feel supported in the transition back home.
Flynn and colleagues (2013) noted, however, that many parents indicated a lack of such
relationships and the lack of resourcefulness of medical professionals; notably the Clinical Nurse
Specialist and the Community Nurse; but in contrast, had rather gained support from outside
social networks (p. 1633). Further, “problems identified by parents in their relationships with
professionals include[d] a lack of emotional support, a lack of empathy and apparent failure to
acknowledge parents’ experiential knowledge” (Kirk & Glendinning, 2002, p. 626). Often
parental experiences were a reflection of their specific experiences relating to the decision to
perform a tracheotomy, their adjustment into a medical role, and the impact socially of caring for
a child with a tracheostomy tube.
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Decision to Perform Tracheotomy
Prior to a tracheotomy, caregivers should be provided all of the necessary information
regarding tracheotomies, including information about the surgical procedure, what to expect after
the surgery, how to care for one’s child, among other instructions. Kirk and Glendinning (2004)
reported that caregivers felt they lacked informational counseling by medical professionals when
being discharged from the hospital. As a result of the family’s strong desire to have his or her
child back home, families often felt rushed into the decision and unprepared for the adjustment
away from the hospital (p. 212). The lack of communication resulted in feelings of
unpreparedness in performing clinical procedures, knowledge of nursing needs, and
technological care that is involved in providing therapy services for a pediatric tracheostomy
patient. Specifically, many caregivers were not informed about the high mortality rate of
pediatric patients with a tracheostomy stating that it was “[un]clear how well physicians counsel
caregivers about the mortality after tracheostomy” (Nageswaran et al., 2018, p. 359). Despite the
challenges associated with the decision to perform a tracheotomy on one’s child, Nageswaran
and colleagues (2018) positively concluded that caregivers tended to be satisfied in their decision
allowing for the extension of their child’s life (p. 360).
The relationship between medical professionals and caregivers is an essential factor in
order for caregivers to feel comfortable in making a decision to allow for the completion of a
tracheotomy. A 2006 study by Carnevale, Davis, Rennick, and Troini, however, found that the
majority of caregivers for children with tracheostomy tubes felt disconnected from the medical
professionals, resulting in “a sense of exclusion, profound isolation, extraordinary responsibility,
resentment, and distrust of the medical system” (p. 53). In addition, these families indicated in
the case of performing a tracheotomy as a life-saving procedure, there was no choice or
20
alternative in the decision to proceed with the surgery (p. 53). Caregiver decisions to have a
tracheotomy performed on their child should “involve information sharing between healthcare
providers and caregivers both about medical and personal preferences” (Nageswaran et al., 2018,
p. 354).
Parental Adjustment into a Medical Role
As stated previously, caregivers of pediatric patients often must transition into a “medical
role” after being discharged from the hospital. Caregivers become experts in tracheostomy tube
maintenance and become the child’s lifeline often due to specific training from various programs
and from “experiential and intuitive knowledge derived from their subsequent experience of
caring for their child” (Kirk & Glendinning, 2002, p. 628). Despite caregiver expertise, the
reported lack of communication and guidance provided by medical professionals leads to
“uncertainty and anxiety,” in which caregivers would “benefit from concerns being explored and
addressed proactively” (Westwood, Hutchins, & Thevasagayam, 2019, p. 6). Similarly, a 2008
study by Mah, Thannhauser, McNeil, and Dewey, found that families created a “new perception
of normal” surrounding “the equipment, the restrictions in lifestyle, and other demands of care,”
in which caregivers were responsible for maintenance including suctioning and tube feeding (p.
985). In addition, Mah and colleagues (2008) reported that after caregivers were able to reduce
stress and anxiety by essentially becoming experts on their child’s technology and equipment,
families were then better able to advocate for their child (p. 986). Similarly, a 2009 study
completed by Hopkins, Whetstone, Foster, Blaney, and Morrison also found that caregivers
adjusted to the medical role in managing their child with a tracheostomy well but felt that
medical professionals should focus more on this adjustment prior to the tracheotomy (p. 18).
Despite apparently adjusting well, these families “remained concerned about their child’s ability
21
to breathe, and their physical and emotional health after the tracheotomy” (Hopkins et al., 2009,
p. 18). The concern of many families regarding their child’s physical and mental health can
consequently lead to additional feelings of anxiety and isolation.
Social Isolation
After caregivers make their decision to have a tracheotomy performed for their child and
over time, become experts in the medical role, the social changes associated for caregivers of
these pediatric patients with tracheostomy tubes may linger as long as the child is cannulated.
“Social isolation is a recurring theme within existing literature …, which indicate a lack of time
and energy for social activities and resulting feelings of isolation,” which may stem from
feelings of stigma, a lack of other individuals understanding their child, and the difficulties of
being able to comfortably care for their child away from home (Westwood et al., 2019, p. 6). In
addition, Flynn and colleagues (2013) concluded that many families become socially isolated in
response to not feeling comfortable in other social settings (p. 1633).
In order to socialize, others must understand and accept the caregivers along with the
tracheotomized child (Flynn et al., 2013, p. 1633). Family caregivers’ professional lives may also
be impacted by the decision to perform a tracheotomy, which impacts their socialization and
work responsibilities. Hopkins and colleagues (2009) demonstrated that in their study, 73% of
caregivers were full time parents and separately, parents who maintained their profession felt
they would be working more hours at a higher-paying job if their child did not have a
tracheostomy (pp. 17-18). Interestingly, full-time family caregivers tended to feel more anxiety
and felt more socially isolated than a caregiver who maintained a job outside of the home (Flynn
et al., 2013, p. 1633).
22
To reduce feelings of isolation, it has been suggested as beneficial for families to find
others in the “trach community,” due to their having many commonalities and similar
experiences. For example, one can participate in the trach community through various outlets,
such as the podcasts like TrachBaby, the Facebook group Moms of Trach Babies, hospital
groups or classes, among others.
Not surprisingly, parental experiences are reliant on and influenced by their involvement
with their child’s therapy. As the caregiver is able to gain and learn more information, they can
presumably interact with greater ease, with both their child and the medical professionals.
“Active participation in the care of an infant with a tracheostomy allows parents to develop
increased sensitivity to their child’s needs, gain confidence in learning caregiving and
management skills, and engage in formal and informal discussion on care topics” (Joseph, 2011,
p. 232). As SLPs are part of the team involved in providing therapy to pediatric patients with
tracheostomy tubes, it is important that this active communication and participation continues in
speech-language therapy. This participation with the SLP will allow for caregivers to have
increased knowledge on therapy techniques and goals for more active involvement with his or
her child.
Role of the Speech-Language Pathologist (SLP)
As stated in the previous chapter, providing services, including screening, evaluation,
diagnosis, and treatment of individuals with tracheostomy tubes falls under the American
Speech-Language-Hearing Association (ASHA) Scope of Practice guidelines for an SLP. For the
purpose of this study, there will be a focus on the SLP’s role in developing and maintaining
communicative abilities for pediatric patients with tracheostomy tubes, whether that involves a
23
one-way speaking valve, manipulation of the tracheostomy tube, use of an AAC device, or a
separate method of communication.
Woodnorth (2004) noted the importance of SLPs utilizing a team approach and working
with other professionals, such as physicians, other medical personnel, educators, psychologists,
and the caregivers (p. 366). However, as Mitchell and colleagues (2013) noted, “approaches to
tracheostomy care are currently inconsistent among clinicians and between different institutions”
(p. 6). In order to attempt to create consensus within medical treatment for tracheostomy patients
among the medical and nonmedical professionals to “minimize complications,” these researchers
examined existing literature to identify gaps in medical practices and create a panel to facilitate a
clinical consensus statement for tracheostomy care (p. 6). Through the panel, the consensus
included 77 statements that achieved consensus with 39 statements later dropped for low scores
of consensuses for adult and pediatric tracheostomy care and an additional 8 statements specific
for pediatric tracheostomy patients. While these researchers noted statements of consensus “are
provided for informational and educational purposes only” because “Clinical consensus
statements may reflect uncertainties, gaps in knowledge, opinions, or minority viewpoints, but
through a consensus development process, many of the uncertainties are overcome, a consensual
opinion is reached, and statements are formed” (p.17). While there is no clear statement or
clinical consensus, it is imperative that all individuals working with pediatric patients must have
an understanding of the medical history, type of tracheostomy tube, communication abilities, and
any changes during the process in order to effectively treat the child. In addition, collaboration
with the pediatric patient’s caregiver is an essential component of therapy in order to provide
families with the necessary information and counseling, as these family caregivers are the
primary providers for the child.
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SLP Preparation
The ASHA’s Scope of Practice, states that SLPs should have the skill set to provide
services to individuals with tracheostomies. Training in providing services to individuals with
tracheostomy tubes, however, has reportedly been inconsistent. Research conducted by Manley,
Frank, and Melvin (1999) concluded that SLPs had a wide variety of preparation working with
this population, specifically regarding evaluations and treatment (p. 177). In addition, Manley
and colleagues (1999) concluded 22 years ago, only 7% of graduate programs provided
coursework regarding information about treating pediatric patients with tracheostomy tubes and
further 51% of practicing SLPs felt inadequately prepared to assess and treat patients with a
tracheostomy tube (p. 174). “Due to the inherent complexity of this clinical role, competent
clinical management of tracheostomized patients is not expected of graduating speech-language
pathologists,” which may be cause for the minimal graduate coursework for an SLP (Ward et al.,
2014, p. 421). In a previous study conducted by Ward, Morgan, McGowan, Spurgin, and Solley
(2012), these researchers distributed an online survey to SLPs with prior clinical experience
working with patients with a tracheostomy in order to understand potential difficulties providing
services to these clients. The researchers found that 71% of SLPs surveyed felt confident in
providing services to patients with tracheostomy tubes, which “was achieved largely through
supervised practice, mentorship and continuing professional development activities” (pp. 327-
329). However, Ward and colleagues (2012) also reported that “almost half felt they were not up
to date with the evidence base, many experienced issues relating to the working in teams and
with poor recognition of the SLT’s role, and wanted more professional development
opportunities in this area” (p. 323).
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Speech-Language Pathologist (SLP) Treatment
As indicated by the American Speech-Language-Hearing Association (ASHA), SLPs are
often consulted in the evaluation, assessment, and therapy for communicative necessities for
individuals with tracheostomies. As stated previously, however, there is a lack of education and
academic preparation for SLPs in graduate programs regarding working with tracheostomy
patients, especially pediatric tracheostomy patients. Due to the lack of academic preparation and
training, “a significant portion of professional training must be conducted in settings that allow
the speech-language pathologist to gain appropriate background and experience” (ASHA, 1993,
p. 18). Due to this extremely specific population, most SLPs working with these patients need to
continue their understanding of providing services to pediatric patients with tracheotomies
through additional training and hands-on experiences if responsible for providing these “niche”
services.
Evaluation and Assessment
Therapy with an SLP ideally begins with an inter- or multidisciplinary evaluation of the
pediatric patient after receiving the tracheotomy. The SLP should be aware of all medical
diagnoses, the medical history, and important related background information when evaluating a
child with a tracheostomy – along with the function of any technology being utilized
(Woodnorth, 2004, p. 366). At the time of the evaluation, communication skills are assessed in
relation to cognitive skills along with the assessment of receptive language, expressive
communication, oral-motor function, articulation, and voice. The SLP evaluates the individual
through subjective and objective data collection and must continue to assess the development of
speech and language.
26
In addition to evaluation, the SLP may work with a pediatric tracheostomy patient in
therapy for communication goals. In a 2020 pediatric tracheostomy course through the Passy-
Muir Education Portal, Kobak outlined the evaluation and therapy processes separately based on
chronological age of the patient. Evaluation and therapy were reportedly assessed through
primarily subjective measures from the SLP. For children birth to six months old, evaluation
focuses on achieving early developmental milestones by using the Infant Communication
Developmental Scale (Kobak, 2020, slide 30). Assessment and evaluation for children six to
twenty-four months old primarily relies on assessing receptive and expressive language and
pragmatic skills, including play behavior and cognition (slide 30).
As a way to objectively collect descriptive data, the 1984 preliminary report of
communication development in young children with tracheostomies completed by Simon and
colleagues, evaluation of either aphonia or intermittent vocalization “was documented by clinical
observations of the speech/language pathologist, … non-verbal behaviors were routinely
evaluated using subjective measurements to document primitive communication attempts, …
objective measures were obtained to document the child’s level of development and to allow
comparison of scores at various stages” (p. 40). These evaluations are utilized in order to
understand the child’s development and assist in recommending an appropriate mode of
communication. It is important to note of course, changes in medical history and communication
skills occur and should be updated throughout the child’s development and may influence the
implementation and selection of therapy.
Therapy
In addition to evaluation and assessment, “therapy” should have a primary focus on
parent education and addressing early developmental milestones. Treatment of communication
27
difficulties requires continuing parental education along with attempting vocalization or oral
exhalation and exploring possibilities of AAC devices (Kobak, 2020, slides 30-31). Therapy
goals also differ based on the patient’s chronological and developmental age; and short-term
objectives in therapy for individuals with a tracheostomy tube also vary depending on the
patient’s ability to vocalize or use technology to communicate. All therapy, however, typically
has long-term objectives surrounding communicative and feeding/swallowing goals. The Speech-
Language Pathology Treatment Planner by Landis (2004) outlined the communicative goals of
needing to “increase effective oral communication” or to maintain “effective use of an
augmentative/alternative communication system in the absence of speech” (pp. 207-208). The
SLP should also be aware of additional medical complexities or components related to the
patient’s tracheostomy tube. Specifically, an SLP should ideally be continuously involved within
a medical assessment working in a multidisciplinary team to discuss the “client’s overall medical
status and respiratory needs,” followed by a speech-language assessment “noting especially the
client’s ability to tolerate occlusion of the tracheostomy tube, breathe with the upper airway,
phonate, and swallow” (p. 208).
Therapy for the pediatric patients with tracheostomy tubes commonly involves a
combination of communication and oral feeding skills. The communication aspect of therapy
with the SLP would contain “comprehensive programs [that] [sic] varied according to each
child’s needs and level of development” (Simon, Fowler, & Handler, 1984, p. 40). For further
information specific to oral feeding therapy, see Arwen, Harendt, and Baker’s work in A Patient-
and Family-Centered Model of Feeding and Swallowing Management for Children with
Tracheostomies (2018).
A 2016 study by Strychowsky and colleagues developed recommendations for medical
28
and non-medical professionals, including SLPs, in a multidisciplinary approach in providing
services to pediatric tracheostomy patients beginning with a range of peri-operative tracheotomy
care, in addition to physical examinations and “emotional support … provided to patients and
their families as appropriate” (p. 252). Examples of techniques within therapy may include
exercises to address inhalation and exhalation while the tracheostomy is occluded or when there
is a deflated cuff. Therapy aims to increase the client’s ability to tolerate a deflated cuff in order
to potentially utilize a one-way speaking valve. In addition, generalized short-term therapy
objectives for clients of all ages focus on producing phonemes in isolation, increasing “the
ability to sustain phonation, phonatory quality, and volume” before transitioning into single
syllable words and phrases (Landis, 2004, p. 210). Clients are taught compensatory strategies for
areas of difficulty in communicating, specifically if necessary, with the usage of various
technology, such as an AAC device. If the client is medically stable, SLPs should work in a
multi- or interdisciplinary team in order to achieve toleration of decannulation and removal of
the tracheostomy tube.
It is important to also note the presence or degree of parent-child anxiety when targeting
short-term therapy objectives (Kobak, 2020, slide 28). Children with medically complex
diagnoses and their parents may demonstrate anxiety or feelings of being overwhelmed in
therapy due to negative experiences within a hospital setting. Specifically, targeting toleration of
cuff deflation can be anxiety-provoking for many individuals within this population. It is
therefore imperative that SLPs assess both the child’s and parent’s readiness in targeting each
short-term objective, anticipate noncompliance, and incorporate counseling within each session.
29
Counseling Methods
An important, yet often neglected aspect of speech-language therapy sessions is
counseling. As Myhren and colleagues (2011) noted, “communication challenges have been
found to be associated with emotional distress among intensive care unit (ICU) patients and…
have found that both patients and relatives experience substantial psychological stress during and
after ICU treatment” (p. 237). As tracheostomy patients spend varying amounts of time in the
Neonatal Intensive Care Unit (NICU), Pediatric Intensive Care Unit (PICU), or ICU – depending
on age, in combination with associated communication difficulties – medical and non-medical
professionals, including SLPs – should utilize both informational and personal adjustment
counseling with patients and their family. Specifically, Myhren and colleagues concluded that
“good communication between the staff and relatives is favourable for the patient and that an
effort to reduce distress in relatives diminishes distress among patients” (p. 242). Counseling is
an effective way to provide good communication for the patient and his/her family members in a
way that will reduce negative feelings. This communication relies on the amount and
effectiveness of the two categories of counseling for SLPs: informational and personal
adjustment counseling.
Informational counseling is often utilized by SLPs to assist clients and their families by
providing sufficient information and understanding regarding a specific communication disorder,
in addition to providing information on the treatment plan for said communication disorder
(Beck & Verticchio, 2014, p. 134). For pediatric patients with tracheostomies, informational
counseling may include, but is not limited to educational products, parent trainings in the
hospital, brochures, or information verbally provided by and given from medical and non-
medical professionals working with the child. Personal adjustment counseling refers “to helping
30
clients cope with attitudes, feelings, problems associated with communication disorder; using
active listening and being comfortable with silence; being able to resonate with the client and
build rapport; and providing hope and optimism” (p. 140). Further, personal adjustment
counseling involves the SLPs paraphrasing or restating the client’s statements in order to further
understand the client’s emotions and then “helping clients to see a way forward” (Luterman,
2020, p. 905). Personal adjustment counseling methods for children with tracheostomies may
include, but are not limited to bibliotherapy, use of stuffed animals, group therapy, and/or asking
open-ended questions.
While there is a clear importance of the role of counseling in therapy, as previously noted
by ASHA (1993), very few graduate programs for SLPs require such training in counseling,
leading new clinicians to potentially provide inadequate and even inappropriate counseling in
therapy sessions (p. 135). Further, while some graduate programs have academic curriculum
regarding educational or informational counseling, “the personal adjustment component does not
appear to be addressed to any great extent, particularly in the graduate speech-language
pathology curricula” (Luterman, 2020, p. 903). In addition, “82% of speech language pathology
students indicate a need for more training in counseling methodology” (Kaderavek et al., 2004, p
153).)
Counseling is not a separate entity in the clinician-client relationship; it is woven
throughout the fabric of the relationship. I think we inherited the notion of counseling as
a separate entity from the medical model of diagnosis where the clinician is seen as the
expert, who first takes a case history, then tests, and then “counsels.” This model lends
itself to counseling as information driven and perhaps advisory. Counseling is as much an
31
attitude as it is a set of specific skills. It is an attitude that suffuses all clinical encounters
with compassion and empathy. (Luterman, 2020, p. 904)
Interestingly, the 2014 study by Beck and Verticchio surveyed both speech-language
pathology and audiology graduate students’ stress and confidence levels in providing counseling
within therapy sessions before and after taking an educational course on counseling. The study
reported the completion of an educational course regarding informational and personal
adjustment counseling for SLPs and audiologists resulted in better understanding of the
importance of listening to the clients, so they felt “cared for and understood” rather than solely
having provided information and guidance to the client and their family (p. 143). In addition, this
study indicated that while both aspects of informational and personal adjustment counseling are
important to therapy, the surveyed therapists believed personal adjustment counseling to be of
greater importance than informational counseling for the benefit of their clients. In fact, their
study showed that the percentage of SLPs who believed the most important function of
counseling to be personal adjustment increased from 36% to 72%, after completing an
educational course on counseling (p. 141).
As many clients are in the hospital, there may be time in which the individual is unable to
communicate due to age, pre-operative preparation, or post-operative care. Research by
Freeman-Sanderson, Togher, Elkins, and Kenny (2018) explored the impact of communication
difficulties on emotional well-being of tracheostomy patients (p. 10). This study was based on
interviews of tracheostomy patients who were unable to communicate for some period of time in
order to understand the emotional impact of that situation. The study revealed four major themes
of responses; “It’s hard communicating without a voice; What is happening to me?; A storm of
dark emotions; and More than a response … it’s participating and recovering” (p. 12-13). While
32
this study revealed the negative emotional impact of difficulty communicating while having a
tracheostomy, there was no mention of counseling being provided to any of the surveyed
patients. The study, however, noted the importance of the clinical application of the results,
suggesting there should be “pre-operative education for communication, increased focus on staff
and family education for facilitation of communication and an increased focus on patient comfort
and emotional needs” (p. 15).
Individuals with a tracheostomy have multifaceted reasons for needing counseling
engrained within therapy. Regardless of why a client or their family might need counseling, it is
important for SLPs to incorporate both informational and personal adjustment counseling
methods into therapy. As stated previously, counseling is listed as part of the ASHA Scope of
Practice for SLPs and it would arguably be unethical to neglect the counseling aspect of therapy.
Because the ASHA Code of Ethics requires that SLPs “engage in only those aspects of
professions that are within the scope of [our] competence, the question arises whether the
competence in communication alone is sufficient to serve this population, especially its youngest
members” (Abraham, 2003, para. 5). As SLPs continue to have pediatric tracheostomy patients
on their caseloads, it is important for them to have access to an increased amount of educational
information in order to ethically provide services to these clients with medically complex
backgrounds. In order to achieve this, SLPs should include information regarding informational
and personal adjustment counseling within therapy sessions in order to fulfill the ASHA Code of
Ethics.
Conclusion
The surgical placement of a tracheostomy tube for a pediatric patient will not only have
an obvious medical and physical impact on the child but will also have a major impact on the
33
child’s communicative abilities, including choosing the most appropriate communicative
method; as well impacting the caregivers’ experiences and quality of life. These experiences may
include the decision to perform the tracheotomy, the adjustment into a medical role, and the
associated social isolation that often results. While many caregivers believe the benefits
outweigh the negatives in performing the tracheotomy, there appears to be a possible disconnect
between medical professionals and families, presumably creating some degree of negative
caregiver experience. In addition, such negative caregiver experiences may stem from difficulty
in adjusting into a medical role for their child, which may result in feelings of isolation. In order
to reduce poor experiences for both the pediatric patient and his or her family caregivers, it is
important that these negative caregiver experiences are minimized and addressed through
counseling, with the use of both informational and personal adjustment counseling intervention.
As the SLP is a professional involved in working with this specific population over an
extended period of time, “the clinician is responsible for counseling and guiding family
members, educators, and other key persons in the child’s life with respect to achieving maximum
potential in the area of communication” (Woodnorth, 2004, p. 365). Counseling is an essential
part of therapy with a child who has a tracheostomy. It is especially important to incorporate
counseling from the start of therapy for both the child and their family. Counseling provides an
outlet for individuals to express their emotions, while gaining an understanding of realistic
expectations throughout therapy. Specifically, counseling is important due to the high-risk nature
of the tracheotomy, along with the fact that many children who undergo tracheotomy have
multiple chronic diagnoses. There is a mortality rate from surgery of 8% for pediatric
tracheostomy patients before they leave the hospital and roughly 38.8% children experience
complications within the first two years of having a tracheostomy (Watters, 2017, p. 802). The
34
inherent presence of medical complications demonstrates the necessity of counseling within
therapy even though it may be a difficult aspect of the clinical responsibilities for many SLPs.
As noted, “There is no literature to guide health professionals’ in the in-depth
understanding of families’ experiences throughout various stages of the trajectory of caring for a
child with a tracheostomy” (Flynn et al., 2013, p. 1634). Although there is limited research, it is
especially important to note that for SLPs, their Scope of Practice states the specific importance
of implementing counseling techniques not only for the child, but also for the child’s caregivers
in order to fulfill the ASHA Code of Ethics. The following chapter will discuss the methods
utilized for the current study in order to investigate both the techniques SLPs utilize to
incorporate counseling into therapy for pediatric patients with tracheostomy tubes and their
families along with the family’s perceptions of these therapy techniques.
35
CHAPTER III: METHOD
The purpose of this study was to investigate the interventions provided and the
counseling techniques used by speech-language pathologists (SLPs) to address the emotional
impact for both pediatric patients receiving tracheostomy tubes and their parents/family
caregivers. A secondary purpose was to investigate the family caregivers’ perspectives of the
counseling methods provided by SLPs to pediatric patients and their families, including
bibliotherapy, educational products, group therapy, and use of open-ended questions. In order to
conduct this study, I employed a mixed methods approach incorporating both quantitative and
qualitative measures through use of an electronic survey and an optional follow-up interview.
The interview provided caregivers with an opportunity to further explain their child’s specific
medical needs and experiences with speech-language therapy. In this chapter, I will describe the
justification of methods, subject participants, two survey instruments, and procedures used in this
study.
Justification of Method
This study utilized both an online survey research method and optional follow-up
interview. Online survey research was chosen as the most desirable method of collecting data for
a variety of reasons. First, electronic surveys allow an easily administered means of comparing
responses and opinions of specific target populations. Second, due to the small size of both target
populations, pediatric tracheostomy patients and SLPs who provide services to pediatric
tracheostomy patients, the survey method allowed me to recruit participants well beyond the
geographic location in which I reside. Additional benefits for utilizing an electronic survey
include “economic advantage… efficiency, [and] reach,” among others to increase the number of
respondents (Van Selm & Jankowski, 2006, p. 437). A final reason for utilizing an electronic
36
survey, rather than paper survey, was due to the COVID-19 global pandemic and increased risk
factors that are present with paper surveys. As Van Selm and Jankowski (2006) stated,
“particular characteristics,” (e.g., medical needs or financial status) “of the population may also
be a reason for conducting an online survey” (p. 437). I selected an online survey in an effort to
protect the population that I studied. Due to the at-risk medical-status of the population of
interest for this study, many families are taking precautions to reduce unnecessary exposure to
COVID-19 (e.g., quarantining mail).
At the conclusion of the parent survey, participants who met selected characteristics (i.e.,
children who currently have a tracheostomy tube; underwent a tracheotomy in the first two years
of life; and children are no more than five years of age) had the option to voluntarily partake in a
follow-up interview with the researcher via telephone or Zoom. Interviews were chosen as a
desirable method of collecting data because interviews provide an opportunity for richer answers
to address particular topics (e.g., the child’s specific medical history or the family’s experiences
medically and with their SLP(s)). At the beginning of the interview, all participants were
provided a statement explaining the study and informed consent.
Participants
This study included two target populations. The first target population was practicing
speech-language pathologists (SLPs) who have provided or who currently provide services to
pediatric patients with tracheostomy tubes. A total of 85 practicing SLPs began the electronic
survey, and 53 SLPs completed the instrument. All 53 SLPs (100%) reported they are a licensed
and/or ASHA-certified SLP with their primary work site presented in Figure 1.
37
Figure 1
Primary work site of SLPs (n = 53)
Note. The participants who selected Other listed “Early Childhood Intervention,” “Early
Intervention,” “Homebred Early Intervention,” “Pediatric sub acute unit,” “Remote education
and consultation,” and “Residential Medical Facility” as way of explanation.
The second target population of this study included parents of children who currently
have or formerly had a tracheostomy tube. A total of 79 parents began the survey, and 69 parents
completed it. Five of the parents elected to participate in a follow-up interview with the
researcher. Figure 2 presents the details about the participants’ relationship to the child who has a
tracheostomy tube. Parents indicated the current age of their child with a tracheostomy tube,
which are presented in Figure 3. Participants reported a wide range of medical conditions that led
to their child undergoing tracheotomy (see Figure 4).
38
Figure 2
Parent/caregiver relationship to the child with a tracheostomy tube (n = 69)
Note. The participant who selected Other listed “Foster mother.”
Figure 3
Current age of child with a tracheostomy tube (n = 69)
39
Figure 4
Proportion of children reporting medical conditions requiring tracheostomy tubes (n = 60)
Note. All participants responded to this survey question. No participants reported “Accident” to
be the reason for their child receiving a tracheostomy tube. Family caregivers could select all
options that apply to their child’s medical needs, so the proportion will not add up to 100%. A
total of 47 family caregivers selected Other as a way of explanation for reasoning to receive a
tracheostomy tube. These answers listed a wide range of specific medical conditions (see
Appendix A).
Instruments
The research for this study was conducted using the electronic-based instrument
Qualtrics, an online survey generator. The survey distributed to SLPs included 61 questions, with
Likert scales, multiple choice, select all that apply, and open-ended questions. This survey began
with demographic items, such as: primary work setting, case load history, and training for
40
working with the population of pediatric tracheostomy patients. Survey items pertaining to
preparation for working with pediatric tracheostomy patients (e.g., Did your graduate school
program offer any dedicated courses regarding tracheostomy and ventilation patients) included
answer options “Yes,” “No,” or “Unsure” and follow-up questions pertaining to if these
academic resources were “Required,” or “Elective.” Questions regarding confidence in
completing medical tasks and providing counseling, (e.g., Suctioning the patient, if necessary)
utilized a five-point Likert scale and questions regarding frequency of completing medical tasks
and providing counseling, (e.g., How frequently do you incorporate story books which depict
children with tracheostomy tubes in therapy) utilized a five-point Likert scale. The questions
pertaining to familiarity with resources (e.g., How familiar are you with the following Passy-
Muir education tool?) utilized a five-point Likert scale. The full SLP survey instrument is
included in Appendix B.
I utilized two separate instruments within this study for parents. The parent survey for
family caregivers of children with tracheostomy tubes included 51 questions. These included
demographics (e.g., the caregiver’s relationship to the child; the child’s medical history
regarding his/her tracheostomy tube; and specifics of various therapy goals and activities).
Following the demographic items, survey questions addressed specific types of informational
counseling received (e.g., How frequently were you provided patient caregiver education prior
to your child’s tracheotomy procedure?); specific types of personal adjustment counseling
received (e.g., Does the speech-language pathologist incorporate toys in role play activities to
promote communication about how your child feels in therapy?); their perception of the SLP’s
comfort or confidence in completing medical tasks and providing counseling, (e.g., Based on the
given definition of Personal Adjustment Counseling, how would you describe your child’s
41
speech-language pathologist’s comfort level when providing Personal Adjustment Counseling?);
their perception of the SLP’s frequency of completing medical tasks and providing counseling
(e.g., How frequently do your child’s speech-language therapy sessions typically include a group
therapy component?). The full parent survey instrument is included in Appendix C.
The second instrument provided for family caregivers of children with tracheostomy
tubes was a follow-up interview. This interview followed a semi-structured set of questions in
order to better understand participants’ specific medical history and experiences working with
SLPs. The interviews included demographic questions, including medical history and
characteristics about their child with a tracheostomy tube, and then progressed into more specific
questions about the information, emotional support, and social support these families received. In
addition, the researcher asked specific questions about speech-language therapy and families
were asked to provide advice for other families who have children with tracheostomy tubes or
for SLPs working with children with tracheostomy tubes and their families. The questions used
for the follow-up interviews are included in Appendix D.
Procedures
The protocol for this study was approved by the Human Subjects Research Committee
(HSRC) at The College of Wooster on November 18, 2020 (see Appendix E). Following
approval, I contacted participants through a variety of organizational groups, including research
community boards, ASHA Special Interest Groups (SIG), and social media outlets. The
recruitment message (see Appendix F) included a request to forward the survey to additional
individuals who met the eligibility criteria. The researcher then submitted an amendment to
Human Subjects Research Committee requesting approval to conduct follow-up interviews,
which was not included in the initial application. On December 9, 2020, the researcher received
42
approval for the interview questions (see Appendix E). The researcher closed the survey for
SLPs on January 19, 2021 and the survey for parents of children with tracheostomy tubes on
January 20, 2021. The results from the 122 combined responses to both surveys will be presented
and discussed in the next chapter.
43
CHAPTER IV: RESULTS AND DISCUSSION
In the previous chapter, I discussed the methods I utilized for gathering data to address
the purpose of this study. This study investigated the perceptions of the interventions provided
and counseling techniques used by speech-language pathologists (SLPs) to address the emotional
impact for both pediatric patients receiving tracheostomy tubes and their parents/family
caregivers. A secondary purpose was to investigate the family caregivers’ perspectives of the
counseling methods provided by SLPs to pediatric patients with tracheostomy tubes and their
families, including bibliotherapy, educational products, group therapy, and the use of open-ended
questions.
In this chapter, I will both present and discuss the results of this study through the two
surveys and interviews I utilized to obtain data. A total of 53 SLPs completed a 61-question
survey pertaining to: their preparation to work with this “niche” population of pediatric
tracheostomy patients; confidence in performing medical tasks and providing counseling;
frequency of performing medical tasks and providing counseling; and familiarity with counseling
resources specific to individuals with tracheostomy tubes. In addition, a total of 69 family
caregivers completed a 51-question survey regarding their perception of their SLP’s confidence
in and frequency of performing both medical tasks and counseling. In this chapter, I will present
the results of these survey instruments. In addition, I will compare the relationship of the SLPs’
perceptions of their preparation, amount, and quality of counseling techniques to the parents’
perceptions of the amount and quality of counseling techniques used by their child’s SLP in
therapy. Finally, I will discuss the results in the context of the current literature.
44
Results
This section will present the data collected from this study. A collective total (N) of 122
responses were recorded from both surveys. Unless otherwise indicated, the n for the SLPs is 53,
and the n for the parent surveys is 69. In addition, five parents participated in an optional, follow-
up interview. Select quotes from interviews will be included to the discussion to help provided
context for the quantitative results. The results will be organized by the overarching themes of
the surveys: SLP training; confidence in performing medical tasks; frequency of performing
tasks. These tasks within each of the overarching themes, will be further broken down into
medical tasks, informational counseling, and personal adjustment counseling.
Speech-Language Pathology (SLP) Training
The ASHA Scope of Practice indicates that SLPs should have the skill set in order to
provide a range of services to pediatric tracheostomy patients. Participants reported how they
received their training to work with this population, specifically by reporting academic training
and preparation received from their respective graduate programs. Questions included “Yes,” or
“No” options and had a follow-up question regarding whether the academic training was
“Elective” or “Required.” If the training was elected, I asked whether or not they participated in
the opportunity. The data are presented in Table 1.
45
Table 1
SLPs’ graduate academic preparation (n=56)
n %
Program offered dedicated courses regarding tracheostomy and ventilation
No 43 76.8%
Yes, elective course 3 5.4%
Yes, required course 7 12.5%
No response 3 5.4%
Program offered dedicated class lectures regarding tracheostomy and ventilation
No 21 37.5%
Yes, elective lecture 8 14.3%
Yes, required lecture 24 42.9%
No response 3 5.4%
Program offered practicum opportunities/placement(s) working with
tracheostomy and ventilation patients
No 10 17.9%
Offered, did not participate 8 14.3%
Offered, did participate 33 58.9%
Unable to recall 2 3.6%
No response 3 5.4%
Program offered a class regarding counseling methods specifically for SLPs
No 29 51.8%
Yes, elective course 2 3.6%
Yes, required course 21 37.5%
No response 4 7.1%
Participants also reported how they gained experience working with pediatric
tracheostomy patients. Participants could select all options that pertained to how they gained
experience (see Figure 5).
46
Figure 5
How SLPs obtained experience to work with pediatric tracheostomy patients (n=56)
Note. Participants could select all options that applied to the ways in which they gained
experience to work with pediatric tracheostomy patients. Participants who selected Other listed
“CEU” (Continuing Education Unit, n=12); “Online courses” (n= 2); “Clinical Fellowship”
(n=2); “Seminars” (n= 2); “PMV” (Passy-Muir Valve, n= 1); “Conferences and professional
development” (n=1); and “My graduate program was more than 50 years ago, I have learned and
also teach on this topic internationally” (n=1) by way of explanation.
Confidence in Performing Medical Tasks and Counseling
Both SLPs and parents responded to questions regarding confidence in performing
certain tasks in their respective surveys. The sections below will further explore SLPs’
47
confidence in various medical tasks and counseling. First, SLPs indicated their level of
confidence in performing medical tasks. Next, SLPs reported their confidence in implementing
informational counseling into therapy, and finally they reported their confidence in personal
adjustment counseling. Separately, parents indicated their perception of how comfortable their
child’s SLP was in implementing both informational and personal adjustment counseling into
therapy.
SLPs’ Confidence in Performing Medical Tasks and Counseling
Participants reported their level of expertise as an SLP in medical speech-language
pathology using a “slider” tool on a scale from 0 to 100, where 0 represented “No Expertise” and
100 represented “Highest Level of Expertise.” The mean expertise level of 76.94 (SD = 22.35,
range = 0 to 100) indicates high level of expertise working in a medical setting.
In addition, the participants reported their confidence in implementing both informational
counseling and personal adjustment counseling using a five-point Likert scale where -2
represented “Extremely Not Confident,” -1 represented “Somewhat Not Confident,” 0
represented “Neutral,” 1 represented “Somewhat Confident,” and 2 represented “Extremely
Confident.” Each of these items will be discussed in the sections that follow.
SLPs’ Confidence in Performing Medical Tasks. Participants answered five questions
pertaining to their confidence in performing medical tasks for pediatric tracheostomy patients
using a five-point Likert scale where -2 represented “Extremely Not Confident,” -1 represented
“Somewhat Not Confident,” 0 represented “Neutral,” 1 represented “Somewhat Confident,” and
2 represents “Extremely Confident.” It is important to note that the additional term “fairly” was
used to represent numbers that fall between 2 and 1. Additionally, the term “slightly” was used to
represent numbers that fall between -2 and -1. Overall, the means indicate that participants are
48
very confident in recognizing distress in the patient (M= 1.86, SD= 0.35) and understanding the
patient’s medical history (M= 1.82, SD= 0.38); participants are fairly confident in conducting
evaluations for one-way speaking valves (M= 1.60, SD= 0.69) and staying calm in medical
emergencies (M= 1.54, SD= 0.67); and participants are only slightly confident in suctioning the
patient, if necessary (M= 0.52, SD= 1.33). The responses of the five questions asked regarding
confidence in performing medical tasks in therapy are displayed in Figure 6.
Figure 6
SLPs’ confidence in performing medical tasks for pediatric tracheostomy patients
SLPs’ Confidence in Providing Informational Counseling. Participants reported their level of
confidence in providing informational counseling within therapy. SLPs reported this mean using
a five-point Likert scale where -2 represented “Extremely Not Confident,” -1 represented
49
“Somewhat Not Confident,” 0 represented “Neutral,” 1 represented “Somewhat Confident,” and
2 represented “Extremely Confident.” The mean rating of 1.46 indicates that SLPs were mostly
confident in providing informational counseling.
I then explored the confidence levels of SLPs implementing informational counseling
with respect to graduate academic preparation through specific courses (i.e., tracheostomy and
ventilation or counseling courses). First, I compared the confidence levels of implementing
informational counseling between SLPs who took tracheostomy and ventilation courses to SLPs
who were not even offered these academic opportunities as an option. In order to compare the
means, I ran an independent samples t-test. The results revealed that there was no statistically
significant difference, t(2.14) = 0.11, p = 0.93 in confidence levels of SLPs incorporating
informational counseling into therapy between SLPs who participated in tracheostomy and
ventilation courses (M= 1.33, SD= 1.16) and those who did not (M= 1.40, SD= 0.80). The data
shows that on average the participants were similarly confident in providing informational
counseling despite differences in their academic preparation.
I also compared the confidence levels of implementing informational counseling between
SLPs who took a course on counseling specifically for SLPs to SLPs who did not take a graduate
course in counseling. In order to compare the means, I ran an independent samples t-test. The
results revealed there was no statistically significant difference, t(30.919) = -0.10, p = 0.92 in
confidence levels of SLPs incorporating informational counseling into therapy between SLPs
who participated in a counseling course (M= 1.48, SD= 0.98) and SLPs who did not participate
in a counseling course (M= 1.45, SD= 0.62). The data show that SLPs reported similar
confidence levels of implementing informational counseling, regardless of academic preparation.
The data are displayed in Figure 7.
50
Figure 7
Confidence in informational counseling with respect to academic preparation
SLPs’ Confidence in Providing Personal Adjustment Counseling. Participants were asked to
report their level of confidence in providing personal adjustment counseling within therapy.
SLPs reported this using a five-point Likert scale where -2 represented “Extremely Not
Confident,” -1 represented “Somewhat Not Confident,” 0 represented “Neutral,” 1 represented
“Somewhat Confident,” and 2 represented “Extremely Confident.” The mean rating of 0.92
corresponds to SLPs being somewhat confident in providing personal adjustment counseling.
I then explored the confidence levels of SLPs implementing personal adjustment
counseling with respect to graduate preparation through specific courses (i.e., tracheostomy and
ventilation or counseling courses). First, I compared the confidence levels of implementing
personal adjustment counseling between SLPs who took tracheostomy and ventilation courses to
Did not participate
in counseling
course
Extremely Not
Confident
1.33 1.40 1.48 1.45
-2
-1
0
1
2
Mea
n
Participated in SLP-specific counseling
course
Did not participate in tracheostomy and ventilation course
Participated in tracheostomy and ventilation course
Extremely Confident
Extremely Not
Confident
Did not participate in counseling
course
51
SLPs who were not even offered these academic opportunities as an option. In order to compare
the means, I ran an independent samples t-test. The results revealed that there was not a
statistically significant difference, t(3.25)= 1.39, p= 0.25 in confidence levels of SLPs
incorporating personal adjustment counseling into therapy between SLPs who participated in
tracheostomy and ventilation courses (M= 0.33, SD= 0.48) and those who did not (M= 0.86,
SD= 1.14). The data show that on average the participants were somewhat confident in
implementing personal adjustment counseling into therapy, despite differences in their academic
preparation.
Second, I compared the confidence levels of SLPs implementing personal adjustment
counseling into therapy between SLPs who took a course on counseling specific for SLPs to
SLPs who did not take any counseling course. I compared the means between these two groups
through an independent samples t-test. The results revealed that there was no statistically
significant difference, t(49.65)= -0.46, p= 0.920 in confidence levels of SLPs incorporating
personal adjustment counseling into therapy between SLPs who participated in SLP-specific
counseling courses (M= 1.00, SD= 0.77) and those who did not participate in any counseling
course (M= 0.87, SD= 1.26). All participants on average were somewhat confident in
performing personal adjustment counseling, despite differences in their academic preparation.
The data are graphed in Figure 8.
52
Figure 8
Confidence in personal adjustment counseling with respect to academic preparation
Comparison of SLPs’ Confidence in Providing Informational Counseling to
Personal Adjustment Counseling. SLPs reported how confident they were in providing both
informational and personal adjustment counseling. I ran a paired-samples t-test to compare
participants’ mean confidence levels when providing informational counseling (M= 1.46, SD=
0.78) to the mean confidence levels when providing personal adjustment counseling (M= 0.92,
SD= 1.08). The results revealed that there was a statistically significant difference t(51)= 3.61,
p= 0.001 in SLPs’ confidence levels of providing informational and personal adjustment
counseling. The data show that SLPs were more confident in providing informational counseling
than in providing personal adjustment counseling when working with pediatric tracheostomy
patients.
0.33
0.861.00
0.87
-2
-1
0
1
2
Mea
n
Did not participate in counseling course
ExtremelyNot
Confident
Extremely Confident
Participated in SLP-specific
counseling course
Did not participate in tracheostomy and ventilation course
Participated in tracheostomy and ventilation course
53
SLPs’ Confidence and Parents’ Perception of SLP Confidence in Counseling
SLPs reported how confident they were in providing counseling to pediatric
tracheostomy patients, while parents reported their perception of how confident their child’s SLP
was providing counseling. In the sections below, both SLPs’ confidence and parents’ perception
of how confident SLPs are in providing both informational and personal counseling will be
reported.
SLPs’ Confidence and Parents’ Perception of SLP Confidence in Informational
Counseling. SLPs reported their confidence level with respect to delivering informational
counseling within therapy to pediatric patients with tracheostomy tubes and their families. SLPs
reported this using a five-point Likert scale where -2 represented “Extremely Not Confident,” -1
represented “Somewhat Not Confident,” 0 represented “Neutral,” 1 represented “Somewhat
Confident,” and 2 represented “Extremely Confident.” The mean of 1.46 corresponds to SLPs
being fairly confident in delivering informational counseling. The parent survey asked parents to
rate their perception of the comfort level of their child’s SLP in providing informational
counseling. Although parents used the same five-point Likert scale, the scale wording used
comfort level rather than confidence. This mean of 0.92 corresponds to parents perceiving SLPs
to be somewhat comfortable when providing informational counseling. The data are displayed in
Figure 9.
54
Figure 9
Mean confidence ratings of SLPs delivering informational counseling and parents’ perception
of their SLP’s comfort in delivering informational counseling (SLP n= 52; Parent n= 46)
Note. Participants reported responses ranging from -2 to 2, in which -2 indicates “Extremely Not
Confident” for the SLP survey or “Extremely Not Comfortable” for the parent survey and 2
indicates “Extremely Confident” for the SLP survey or “Extremely Comfortable” for the parent
survey.
SLPs reported how confident they were in providing specific informational counseling
techniques (i.e., providing parent-training for parents to effectively use teaching materials at
home and providing materials), while parents reported how confident their child’s SLP was in
providing these specific informational counseling. SLPs reported a mean of 1.64 (SD= 0.69,
range = -2 to 2) and 1.52 (SD= 0.70, range = 1 to 2), respectively using the same five-point
Likert scale as above. The means correspond to SLPs feeling fairly confident in providing these
1.46
0.92
-2
-1
0
1
2
Mea
n SLPs
Parents
Extremely Confident
Extremely Not
Confident
55
specific informational counseling techniques. The parents’ mean ratings were 0.41 (SD= 1.3,
range = -1 to 2) and 0.60 (SD= 1.08, range = -1 to 2) for the same questions, respectively using
the previously described scale. The means correspond with parents perceiving SLPs to be
slightly confident in providing these specific types of informational counseling. The data are
presented in Figure 10.
Figure 10
Mean confidence ratings of specific informational counseling techniques used by SLPs and
perceived by family caregivers
SLPs’ Confidence and Parents’ Perception of SLP Confidence in Personal
Adjustment Counseling. SLPs described how confident they feel in delivering personal
adjustment counseling to pediatric patients with tracheostomy tubes using a five-point Likert
scale where -2 represented “Extremely Not Confident,” -1 represented “Somewhat Not
1.641.52
0.410.60
-2
-1
0
1
2
Mea
n SLPs
Parents
Routinely provided sufficient parent-training for parents to effectively use
teaching materials at home
Routinely provided materials to the client and his/her family
Extremely Confident
ExtremelyNot
Confident
56
Confident,” 0 represented “Neutral,” 1 represented “Somewhat Confident,” and 2 represented
“Extremely Confident.” The mean of 0.92 corresponds to SLPs being somewhat confident in
providing personal adjustment counseling. The parent survey asked participants to rate their
perception of the comfort level of their child’s SLP in providing personal adjustment counseling.
Although parents used the same five-point Likert scale, the scale wording used comfort level
rather than confidence. The parents’ mean rating for this item was 0.40, which corresponded to
parents perceiving SLPs to be slightly comfortable in providing personal adjustment counseling.
The data are displayed in Figure 11.
Figure 11
SLPs’ confidence in delivering personal adjustment counseling and parent’s perception of their
SLP’s comfort in delivering personal adjustment counseling (SLP n= 52; Parent n= 46)
Note. Participants reported responses ranging from -2 to 2, in which -2 indicates “Extremely Not
Confident” for the SLP survey or “Extremely Not Comfortable” for the parent survey and 2
indicates “Extremely Confident” for the SLP survey or “Extremely Comfortable” for the parent
survey.
0.92
0.40
-2
-1
0
1
2
Mea
n
SLPs
Parents
Extremely Confident
Extremely Not
Confident
57
Participants then responded to two questions with respect to how confident the SLP was
in delivering specific personal adjustment counseling techniques (i.e., demonstrating interest in
the parent’s emotional well-being and separately demonstrating interest in the child’s emotional
well-being). SLPs reported a mean of 1.62 (SD= 0.57, range= 0 to 2) for demonstrating interest
in the parent’s emotional well-being and 1.75 (SD= 0.4, range= 1 to 2) for demonstrating
interest in the child’s emotional well-being using the same five-point Likert scale described
previously. The means correspond to SLPs being somewhat confident in the specific personal
adjustment counseling techniques. Parents reported a mean of 0.35 (SD= 1.13, range= -1 to 2)
and 0.91 (SD= 1.08, range= -1 to 2) for the same questions, using the same five-point Likert
scale with comfort levels rather than confidence. The mean of 0.35 corresponds to parents
perceiving the SLP to be neutral in demonstrating interest in their emotional well-being, but the
mean of 0.91 indicates that parents perceived their child’s SLP to be somewhat comfortable in
demonstrating interest in the child’s emotional well-being. The data are graphed in Figure 12.
58
Figure 12
Confidence of specific personal adjustment counseling techniques used by SLPs and perceived
by family caregivers
Frequency of Performing Tasks
Both SLPs and parents responded to questions regarding the frequency with which SLPs
performed various tasks. The sections below will further explore the frequency with which SLPs
perform certain medical tasks and provide counseling. SLPs first indicated the frequency of
providing informational counseling and then the frequency of providing personal adjustment
counseling. Separately, parents indicated their perception of the frequency with which their
child’s SLP implemented both informational and personal adjustment counseling into therapy.
SLPs’ Frequency of Counseling
SLPs described how frequently they provide counseling to pediatric patients with
tracheostomy tubes and their parents/family caregivers. In the following sections, I will present
1.62 1.75
0.35
0.91
-2
-1
0
1
2
SLPs
Parents
Demonstrating interest in the child's emotional well-being
Extremely Confident
ExtremelyNot
Confident
Demonstrating interest in the caregiver(s)' emotional well-being
59
the results for participants’ frequency of providing informational counseling, frequency of
providing personal adjustment counseling, and the relationship between frequency and
confidence levels when providing these types of counseling.
SLPs’ Frequency of Providing Informational Counseling. SLPs responded to two
questions concerning the frequency with which they use informational counseling techniques
(i.e., providing patient caregiver education prior to tracheotomy and providing home-care
instruction manuals). Participants responded to these questions using a five-point Likert scale
where 1 represented “Never,” 2 represented “Rarely,” 3 represented “Occasionally,” 4
represented “Frequently,” and 5 represented “Always.” The means of 3.02 and 2.88, respectively
to the techniques listed previously, indicate that SLPs occasionally provide these specific types
of informational counseling to pediatric tracheostomy patients. The data are presented in Table 2.
Table 2
SLPs frequency of implementing informational counseling techniques in therapy
n M SD Range
Routinely provides patient caregiver education prior to your
patient’s tracheotomy procedure
52 3.02
1.58
1 to 5
Routinely provides home-care instruction manuals for
tracheostomy
51 2.88 1.58 1 to 5
Note. Participants provided a range of responses between 1 and 5, with 1 representing “Never”
and 5 representing “Always.”
SLPs reported how frequently they provide informational counseling, using a “slider”
tool where 0 represented “Never” and 100 represented “Always.” The mean of 86.27 (SD=17.09,
range= 20 to 100) corresponds to SLPs fairly frequently incorporating informational counseling
into therapy with pediatric tracheostomy patients. I wanted to explore whether or not the
60
frequency of informational counseling was related to academic preparation through specific
classes (i.e., tracheostomy and ventilation or counseling courses). I began by comparing the
frequency of providing informational counseling between SLPs who took a tracheostomy and
ventilation course to SLPs who were not even offered these academic opportunities as an option.
This question utilized a “slider” scale tool, where 0 represented “Never” and 100 represented
“Always.” SLPs who took a tracheostomy and ventilation course reported a mean of 87.33 and
SLPs who were not offered a tracheostomy and ventilation course reported a mean of 85.38. In
order to compare the means, I ran an independent samples t-test. The results revealed that there
was no statistically significant difference, t(2.49)= -0.23, p= 0.838 regarding how frequently
SLPs implemented informational counseling between SLPs who participated in tracheostomy
and ventilation courses (M= 87.33, SD= 14.19) from their graduate program and SLPs who did
not (M= 85.38, SD= 17.63). Whether or not they participated in a tracheostomy and ventilation
course, the SLPs reported similar levels of frequency in providing informational counseling.
Both groups had means that reflect SLPs fairly frequently provide informational counseling to
these patients.
Next, I compared SLPs’ frequency of providing informational counseling between SLPs
who took a course on counseling specific for SLPs to SLPs who did not take a graduate course
on counseling using the same slider scale as reported previously. SLPs who took a counseling
course reported a mean of 88.21 and SLPs who did not participate in counseling courses reported
a mean of 85.03. The results revealed there was no statistically significant difference t(43.33)= -
0.66, p= 0.515 in how frequently SLPs incorporate informational counseling into therapy
between SLPs who took a counseling course for SLPs (M= 88.21, SD= 17.36) to those who took
no counseling course (M= 84.03, SD= 18.29). The data show that SLPs provide similar levels of
61
informational counseling, despite differences in their academic preparation. The data are
displayed in Figure 13.
Figure 13
Frequency in providing informational counseling with respect to academic preparation
SLPs’ Frequency of Providing Personal Adjustment Counseling. SLPs reported how
frequently they provide personal adjustment counseling by responding to three questions (i.e.,
use of group therapy, bibliotherapy, role play through stuffed animals). Participants responded to
these items using a five-point Likert scale where 1 represented “Never,” 2 represented “Rarely,”
3 represented “Occasionally,” 4 represented “Frequently,” and 5 represented “Always.” The
means correspond with SLPs rarely implementing these specific types of personal adjustment
counseling into therapy with pediatric tracheostomy patients. The data are displayed in Table 3.
87.33 85.38 88.21 85.03
0
20
40
60
80
100
Participated intracheostomy andventilation course
Did not participate intracheostomy andventilation course
Participated in SLPspecific counseling course
Did not participate incounseling course
Mea
n
Never
Always
62
SLPs were also asked in an open-ended question about their favorite open-ended question to
address their clients’ emotions. The responses are in Appendix G.
Table 3
SLP frequency of implementing personal adjustment counseling techniques in therapy
n M SD Range
Incorporate stuffed animals in role play activities to promote
communication about how the child feels about having a
tracheostomy tube
52 2.37 1.253 1 to 5
Incorporate story books which depict children with
tracheostomy tubes
52 2.12 1.166 1 to 5
Includes a group therapy component 42 1.48 0.740 3 to 5
Note. Participants provided a range of responses between 1 and 5, with 1 representing “Never”
and 5 representing “Always.”
SLPs reported how frequently they provide personal adjustment counseling, using a
“slider” tool where 0 represented “Never” and 100 represented “Always.” The mean of 67.13
(SD=29.25, range= 0 to 100) corresponds to SLPs somewhat frequently incorporating personal
adjustment counseling into therapy with pediatric tracheostomy patients.
I wanted to explore whether or not the frequency of personal adjustment counseling was
related to academic preparation through specific classes (i.e., tracheostomy and ventilation or
counseling courses). I began by comparing the frequency of SLPs providing personal adjustment
counseling between SLPs who participated in a tracheostomy and ventilation course in graduate
school to SLPs who were not even offered a tracheostomy and ventilation course, using a
“slider” tool scale where 0 represented “Never” and 100 represented “Always.” To compare the
means, I ran an independent samples t-test. The results revealed that there was no statistically
significant difference, t(1.31)= -0.57, p= 0.65 regarding how frequently SLPs implemented
63
personal adjustment counseling between SLPs who participated in tracheostomy and ventilation
courses (M= 72.50, SD= 17.68) and SLPs who did not (M= 64.93, SD= 29.89). The data
revealed that on average, SLPs are somewhat frequently providing personal adjustment
counseling to pediatric patients and their families, regardless of differences in their academic
preparation.
Next, I compared the frequency of SLPs providing personal adjustment counseling
between SLPs who participated in a counseling course specific for SLPs to SLPs who did not
participate in a course for counseling. SLPs responded to this item using the same “slider” tool as
reported previously. To compare the means, I ran an independent samples t-test. The results
revealed there was no statistically significant difference, t(45.20)= 0.958, p= 0.343 in how
frequently SLPs incorporate personal adjustment counseling into therapy between SLPs who
took a counseling course for SLPs (M= 62.50, SD= 25.60) and those who did not take any
course in counseling (M= 70.43, SD= 31.63). The data show that SLPs are somewhat frequently
providing personal adjustment counseling to pediatric patients with tracheostomy tubes and their
families, despite differences academic preparation with respect to counseling courses. The results
are displayed in Figure 14.
64
Figure 14
Frequency of providing personal adjustment counseling with respect to academic preparation
Comparison of SLPs’ Frequency in Providing Informational Counseling to Personal
Adjustment Counseling. SLPs reported how frequently they provide both informational and
personal adjustment counseling. I ran a paired samples t-test to compare the mean frequency
levels when providing informational counseling (M= 87.98, SD= 14.21) to the mean frequency
levels when providing personal adjustment counseling (M= 67.91, SD= 29.04). The results
revealed that there was a statistically significant difference t(46)= 5.75, p< 0.001 in how
frequently SLPs provide informational and personal adjustment counseling. The data show that
SLPs more frequently provide informational counseling than personal adjustment counseling.
SLPs’ Frequency of Counseling Patients in Relation to Confidence Levels of
Counseling Methods. SLPs described both their confidence in and frequency of providing
informational counseling and personal adjustment counseling. First, I explored whether or not
there was a relationship between confidence in providing informational counseling and
frequency of providing informational counseling. I measured the relationship of confidence and
72.564.93 62.50
70.43
0
20
40
60
80
100
Participated intracheostomy andventilation course
Did not participate intracheostomy andventilation course
Participated in SLPspecific counseling
course
Did not participate incounseling course
Mea
nAlways
Never
65
frequency levels of performing informational counseling within therapy, in which I ran a Pearson
correlation, r(46)= -0.399, p= 0.005. The results revealed a moderate statistically significant
relationship, such that SLPs who reported using informational counseling most often were also
those who reported being most confident with these counseling techniques. Next, I explored
whether or not there was a relationship between confidence in providing personal adjustment
counseling and frequency of providing personal adjustment counseling. I measured the
relationship of confidence in and frequency of performing personal adjustment counseling within
therapy using a Pearson correlation, r(47)= 0.785, p < 0.001. The results revealed a fairly strong
statistically significant relationship, such that SLPs who reported using personal adjustment
counseling most often were also those who reported being most confident with these counseling
techniques.
Parents’ Perception of how Frequently SLPs Provide Counseling
Parents described their perception of how frequently their child’s SLP provides or
provided counseling to their children and themselves within therapy. In the following sections, I
will present participants’ perceptions of how frequently they received informational counseling
and personal adjustment counseling.
Parents’ Perception of how Frequently SLPs Provide Informational Counseling.
Parents reported their perception of how frequently their child’s SLP provided informational
counseling in therapy. Parents responded to two questions with respect to their perception of how
frequently their child’s SLP incorporated informational counseling methods in therapy (i.e.,
providing the caregiver with information regarding parent-to-parent support groups and
providing the child with information regarding support groups for children with tracheostomy
tubes). These questions used a five-point Likert scale where 1 represented “Never,” 2
66
represented “Rarely,” 3 represented “Occasionally,” 4 represented “Frequently,” and 5
represented “Always.” The means correspond to parents perceiving their SLP to rarely provide
these specific types of informational counseling. The data are presented in Table 4.
Table 4
Parents’ perception of how frequently their child’s SLP provided informational counseling
n M SD Range
The SLP routinely provided the caregiver with information
regarding parent-to-parent support groups for children with
tracheostomy tubes
47 2.15 1.215 1 to 5
The SLP routinely provided the child with information
regarding support groups for children with tracheostomy tubes
48 2.04 1.129 1 to 5
Note. Respondents reported a range of responses from 1 to 5, where 1 represented “Never” and 5
represented “Always.”
Parents’ Perceptions of how Frequently SLPs Provide Personal Adjustment
Counseling. Parents described how frequently they perceive their child’s SLP to provide
personal adjustment counseling in therapy. Participants responded to two questions with respect
to specific types of personal adjustment counseling (i.e., the caregiver feeling discouraged when
leaving therapy and the child feeling discouraged when leaving therapy). These questions used
the same five-point Likert scale as described previously. The means correspond to parents
occasionally feeling discouraged after therapy and the child frequently feeling discouraged after
therapy with their SLP. The data are displayed in Table 5.
67
Table 5
Parents’ perception of how frequently their child’s SLP provided personal adjustment
counseling
n M SD Range
The caregiver typically feels discouraged when leaving therapy
with the SLP
45 3.09 1.24 1 to 5
The child typically feels discouraged when leaving therapy with
the SLP
31 3.81 1.17 1 to 5
Note. Participants provided a range of responses between 1 and 5, with 1 representing “Never”
and 5 representing “Always.”
SLPs’ Frequency and Parents’ Perception of how Frequently SLPs Provide Counseling
SLPs reported how frequently they provided counseling to pediatric tracheostomy
patients, while parents reported how frequently their child’s SLP provided counseling. In the
sections below, both SLPs’ frequency and parents’ perception of how frequently SLPs provided
both informational and personal counseling will be reported.
SLPs’ Frequency and Parents’ Perception of how Frequently SLPs Provide
Informational Counseling. SLPs reported how frequently they implement informational
counseling in therapy for pediatric patients with tracheostomy tubes. SLPs reported a mean of
86.27, using a “slider” tool with 0 representing “Never” and 100 representing “Always.” The
mean corresponds to SLPs frequently providing informational counseling. Parents completed a
similar question to indicate how frequently their SLP incorporates informational counseling.
Parents reported a mean of 45.11 using the same slider tool. The mean corresponds to parents
only occasionally being provided informational counseling. The mean for parents indicates that
they feel as if their child’s SLPs provides informational counseling at a much lower rate than the
68
SLP participants from this study report how frequently they provide informational counseling.
SLPs’ Frequency and Parents’ Perception of how Frequently SLPs Provide
Personal Adjustment Counseling. SLPs reported how frequently they provide personal
adjustment counseling in therapy for pediatric patients with tracheostomy tubes, using a “slider”
tool where 0 represented “Never” and 100 represented “Always.” The mean of 67.13 (SD =
29.25, range = 0 to 100) indicates that SLPs frequently incorporate personal adjustment
counseling. Parents reported how frequently they perceive their child’s SLP to provide personal
adjustment counseling. The parents’ mean of 45.20 (SD = 33.79, range = 0 to 100) indicates that
parents feel as if they only occasionally receive personal adjustment counseling.
Discussion
In the rest of this chapter, I will discuss the results within the context of current literature.
The results will be discussed in the same structure that was used in the results section. I will
begin by discussing the training speech-language pathologists (SLPs) received in order to work
with the specific population of pediatric tracheostomy patients. I will then explore confidence of
SLPs in performing medical tasks and providing counseling, as viewed by the SLPs themselves
and by parents of a child with a tracheostomy tube. Finally, I will discuss the frequency with
which SLPs deliver counseling within therapy, as viewed by the SLPs themselves and by the
family caregiver. A comparison of the SLPs’ and parents’ perceptions of the counseling
delivered and received will be included, as well as a comparison of SLPs’ perception of their
confidence in and frequency of providing various types of counseling.
Speech-Language Pathology (SLP) Training
The majority of SLPs reported that their graduate program did not offer a dedicated
course regarding tracheostomy and ventilation (n= 43 or 76.8%). However, 42.9% (n= 24) SLPs
69
reported having a required lecture in tracheostomy and ventilation. In addition, roughly 75% of
the SLPs (n= 41) reported their graduate program offered practicum opportunities or placements
working with tracheostomy and ventilation patients, and 33 of these SLPs participated in the
opportunities. The literature is in agreement with the findings that the majority of graduate
programs do not offer courses specific for tracheostomy and ventilation, but rather that SLPs
who work with this population gain their experience through field and job experience. Manley
and colleagues (1999) indicated that only 7% of graduate programs provide academic
coursework to prepare SLPs to work with pediatric tracheostomy patients. More recently, Ward
and colleagues (2014) indicated that “due to the inherent complexity of this clinical role,
competent management of tracheostomized patients is not expected of graduating speech-
language pathologists” which may be an indication of the lack of graduate academic preparation.
In addition, SLPs reported their graduate preparation of counseling through counseling
courses, in which 23 SLPs (41.1%) went to graduate programs that provided a course specific for
SLPs in counseling and 21 (37.5%) reported this counseling course to be required. The data in
my study are consistent with the current literature regarding counseling courses specific for
SLPs. The ASHA Scope of Practice states that counseling is an important aspect of providing
services to patients within therapy. Doud, Hoepner, and Holland (2020) further noted that
“specific clinical counseling skills identified include empowering decision making, educational
counseling, support, fostering self-advocacy, addressing emotional responses to communication
or swallowing disorders, and making appropriate referrals” (p. 789). However, there remains a
lack of education, and even more specifically, a lack of standardization of education for
counseling courses within graduate programs, as seen by the data presented in Table 1 describing
the academic preparation available in graduate programs. Specifically, Doud and colleagues
70
reported that 59% of Communication Sciences and Disorders graduate programs, for both
audiology and speech-language pathology, within the United States offer a course specifically
for counseling. Of these programs, 52% of these courses are required and 48% are elective,
which are similar to the percentages obtained in this study (p. 793).
Participants in my study reported how they received their training working with this
population. SLPs reported gaining experience from a range of, and multiple, methods. The
majority of SLPs reported gaining experience through on-the-job training (n= 51 or 96%). In
addition, SLPs gained experience from academic preparation (n= 16), clinical practicum
opportunities (n= 16), externships (n= 16), internships (n=4), and other opportunities (n= 21).
Of note, participants (n= 12) reported they obtained experience through CEUs, or by earning
continuing education units, among other experiences. Due to the limited academic opportunities
provided by graduate programs, my findings are consistent with those of Ward, Morgan,
McGowan, Spurgin, and Solley (2012) who found that 71% of clinicians felt confident in
working with pediatric tracheostomy patients due to “supervised practice, mentorship, and
continuing professional development activities” (pp. 327-329).
The majority of the SLPs in my study reported gaining their knowledge of working with
this population through means other than academic preparation; specifically, the majority of
SLPs were not provided graduate opportunities to participate in academic courses in
tracheostomy and ventilation. However, 41 SLPs (80.4%) indicated that their graduate programs
offered practical clinical experiences working with pediatric tracheostomy patients, in which
they could participate to gain experience and knowledge of best clinical practices working with
this population. Around half of SLPs had academic opportunities to take a course in counseling.
While not all SLPs reported that their programs included academic courses in these classes,
71
nearly all SLPs reported gaining experience through on-the-job training and gaining experience
through continuing to work with these populations. It is important to note that the people who are
currently providing services to this population are the individuals who disproportionately took
advantage of the elective opportunities.
Confidence in Performing Medical Tasks and Counseling
In this study, I explored SLPs’ confidence in performing tasks, specifically confidence in
performing medical tasks, providing informational counseling, and providing personal
adjustment counseling. The specific data will be discussed in the sections that follow along with
parents’ perceptions of SLPs’ confidence levels.
SLPs’ Confidence in Performing Medical Tasks and Counseling
On average, the SLPs who participated in this study rated their expertise level working in
medical speech-language pathology on average to be 76.94 with 0 representing “No Expertise”
and 100 representing “Highest Level of Expertise.” The fairly high rating suggests that the SLPs
who participated in this study are the appropriate people to have completed this survey. This
confidence level is consistent with Ward and colleagues’ (2012) research in which 71% of SLPs
reported feeling confident in providing services to pediatric tracheostomy patients (p. 327). The
fairly high confidence level was reported to be largely due to “supervised practice, mentorship
and continuing professional development activities” (pp. 327-329). It is important to note,
however, that self-reported expertise is not quite the same thing as confidence level.
I further explored SLPs’ perception of their confidence in performing medical tasks,
providing informational counseling, and providing personal adjustment counseling. I then
investigated whether there was any influence of academic preparation on confidence in
implementing counseling within therapy. Finally, I compared how confident SLPs perceive
72
themselves in delivering counseling to how parents perceive the confidence of SLPs who work
with their children.
SLPs’ Confidence in Performing Medical Tasks. SLPs reported their confidence in
performing various medical tasks that may be required during a therapy session with a pediatric
patient who has a tracheostomy tube. The results were encouraging in that SLPs reported being
very confident in recognizing distress in the patient and understanding the patient’s medical
history. SLPs also reported being fairly confident in conducting evaluations for one-way
speaking valves and staying calm in medical emergencies. However, SLPs were only slightly
confident in suctioning the patient, if necessary. It is important that SLPs are confident in these
medical tasks, as the Scope of Practice specifies that SLPs should be involved throughout the
entire therapy timeline for pediatric tracheostomy patients. SLPs are involved in the early stages
by performing initial evaluations and assessments of these children. Many times, SLPs continue
to work with these children on communication and feeding/swallowing goals in therapy as the
child gets older and communication develops. Due to SLPs’ participation in the care of children
with tracheostomy tubes, it is important to be confident in all of these medical tasks in order to
provide the best services for their clients. To the best of my knowledge, there is no literature that
has explored confidence levels of SLPs in providing the medical aspects of therapy for pediatric
tracheostomy patients.
SLPs’ Confidence in Providing Informational Counseling. The majority of SLPs
reported being fairly confident in providing informational counseling, which for pediatric
tracheostomy patients includes a range of tools to provide the family or patient with information
on a specific communication disorder and on the treatment plan for this communication disorder.
73
It was a positive finding that SLPs have high levels of confidence in providing informational
counseling.
Due to informational counseling relying on the SLP having knowledge of specific
communication disorders and treatment plans, I explored the importance of academic
preparation, through tracheostomy and ventilation or counseling courses, in feeling adequately
prepared and confident in providing families with informational counseling. I expected to see
higher levels of confidence in providing informational counseling for SLPs who participated in a
tracheostomy and ventilation course in graduate school due to their increased academic
knowledge concerning these clients. Although the results were not statistically significant, it is
important to note that the population of SLPs who participated in a tracheostomy and ventilation
course was very small (n= 3) and therefore the data were heavily influenced by the limited
number of responses. However, it is encouraging that SLPs do not require a specific course in
tracheostomy and ventilation or counseling in order to feel confident in providing informational
counseling to pediatric tracheostomy patients. To the best of my knowledge, there is no literature
investigating the impact of graduate courses in tracheostomy and ventilation on SLPs’
confidence in providing informational counseling to pediatric tracheostomy patients.
I then explored the relationship of academic preparation through counseling courses for
SLPs to SLPs’ confidence in implementing informational counseling. I would not expect an
impact on confidence levels of providing informational counseling based on a course in
counseling. The data are consistent with this expectation in that there was no statistically
significant difference of confidence levels in providing informational counseling between SLPs
who participated in a counseling course for SLPs and SLPs who did not participate in a
counseling course. While there were no statistically significant differences between the groups, it
74
is encouraging that despite academic differences, SLPs are fairly confident in providing
informational counseling to pediatric tracheostomy patients through a variety of techniques.
Again, to the best of my knowledge, there is no literature investigating the relationship between
SLPs’ academic preparation through graduate counseling courses and confidence levels when
providing informational counseling.
SLPs’ Confidence in Providing Personal Adjustment Counseling. SLPs reported being
somewhat confident in providing personal adjustment counseling, which for pediatric
tracheostomy patients includes a range of techniques to understand their patients’ and caregivers’
emotions and help them address these feelings. Interestingly, SLPs reported lower confidence
levels in providing personal adjustment counseling than in providing informational counseling.
I explored the relationship of SLPs’ confidence in providing personal adjustment
counseling to SLPs’ graduate preparation, through tracheostomy and ventilation or counseling
courses. I expected to see no impact on confidence of providing personal adjustment counseling
for SLPs who participated in tracheostomy and ventilation courses compared to those who did
not complete such coursework. While there were no statistically significant differences between
the groups, it is important to note that only three SLPs reported participating in a tracheostomy
and ventilation course, which likely made it more difficult to identify group differences given the
small sample size.
I did, however, expect to see an impact in confidence levels for SLPs who participated in
counseling courses compared to SLPs who did not complete counseling coursework. The results
revealed that there were no statistically significant differences of SLPs’ confidence levels when
providing personal adjustment counseling as a function of completing either tracheostomy and
ventilation or counseling courses. The data are inconsistent with the current literature. Beck and
75
Verticcio’s (2014) research indicated that counseling courses were “effective in increasing both
speech-language pathology and audiology students’ confidence levels,” especially personal
adjustment counseling, largely due to “what they had learned and experienced in the course…
however, indicated that they still need more experience before they would feel fully confident”
(pp. 142-143). While there were no statistically significant differences between the groups, it is
important to note that only three SLPs reported participating in a tracheostomy and ventilation
course, which likely made it more difficult to identify group differences given the small sample
size. While I recognize that this group was really small making it unlikely to be able to identify
statistically significant differences, these analyses were run for exploratory purposes.
Comparison of SLPs’ Confidence in Providing Informational Counseling to
Personal Adjustment Counseling. SLPs reported being fairly confident in providing
informational counseling and somewhat confident in providing personal adjustment counseling.
The results revealed a statistically significant difference in confidence levels when providing
these types of counseling. The data indicating that SLPs have higher confidence levels in
providing informational counseling than personal adjustment counseling is consistent with the
current literature. Luterman (2020) reported that even in graduate counseling courses, “the
personal adjustment component does not appear to be addressed to any great extent, particularly
in the graduate speech-language pathology curricula” (p. 903). The lack of academic coursework
on personal adjustment counseling may be the cause for SLPs reporting lower confidence levels
in providing personal adjustment counseling as Beck and Verticcio (2014) noted that
“completing a course in any topic should result in an increase in students’ confidence regarding
the course content” (p. 143).
76
SLPs’ Confidence and Parents’ Perception of SLP Confidence in Counseling
Prior to interpreting these comparisons, it is essential to acknowledge that the SLPs who
participated in this study are not necessarily the specific SLPs who currently provide or have
provided services to the children of the parents who participated in this study. I explored the
similarities and differences in how SLPs and parents perceive the counseling provided to
pediatric tracheostomy patients and their families because ASHA states the importance of not
only providing services to the child, but also “providing ongoing assessment with attention to
parent/caregiver experience, including caregiver stress, comfort during interaction, and ability to
facilitate positive cognitive communication development” (ASHA, 2020, para. 45). These
interactions with the patient’s caregiver include both informational and personal adjustment
counseling. The following sections will describe both SLPs’ confidence along with parents’
perceptions of how confident their child’s SLP was in providing these types of counseling.
SLPs’ Confidence and Parents’ Perception of SLP Confidence in Informational
Counseling. In this study, SLPs reported their confidence in providing informational counseling,
while parents reported their perception of how comfortable their child’s SLP was in providing
informational counseling. SLPs reported being fairly confident in providing informational
counseling, while parents reported their SLPs to only be somewhat confident in providing
informational counseling. That is, there is a disparity between how confident SLPs reported
themselves to be and parents’ perceptions of how confident the SLPs were when providing
informational counseling. Interview Parent A indicated her wish that SLPs who work with these
children have knowledge that is “somewhat specific to having a trach because those pieces of
information can be helpful. I also think just to have an awareness of the complexity in family’s
lives with a kid who has a trach and a vent.”
77
In addition, both sets of participants rated SLPs’ confidence levels in utilizing specific
informational counseling techniques. SLPs reported their confidence in providing sufficient
parent-training for parents to effectively use materials at home, while parents reported their
perception of how confident their child’s SLP was in providing them with parent-training to
effectively use materials at home. SLPs reported being fairly confident in providing parent-
training to families, however, parents perceived their child’s SLP to only be slightly confident in
providing sufficient parent-training. The large difference in reported confidence levels is a
notable finding because parents are not feeling as if they receive sufficient training to work on
speech-language therapy goals at home.
SLPs and parents also reported SLPs’ confidence levels in specific types of informational
counseling. SLPs reported being fairly confident in providing families informational counseling
through routinely providing materials to clients and their families, however, parents reported
their SLP only being slightly confident this specific type of informational counseling. The
difference in reported confidence levels indicates that there is a disconnect between the
information that SLPs are providing families, either through explanation or amount, such that
families do not feel adequately prepared to work on short- and long-term objectives at home. In
both sets of ratings, SLPs reported much higher confidence levels than the parents perceived. To
the best of my knowledge, there is no literature comparing SLP and parents’ perception of SLPs’
confidence in providing informational counseling.
Finally, it is also important, as an SLP, to have an understanding of information that will
be of greatest importance to their clients’ families. Specifically, Interview Parent C noted, “I
wish I would have been warned a little more his inability – just the inability to hear him cry.
Because that kills me.” Similarly, Interview Parent B noted that she wished she received “some
78
preliminary information about what bumps in the road could look like to feel like we had
expectations… It would have been helpful to have a holistic picture of like ‘this is what we want
to happen, but this is what could happen.’” As families adjust to a life-changing situation,
becoming medical-centered families, information, such as a child’s inability to vocalize, is
incredibly important to be aware of as this is the information that will not only help families’
ability to connect to their child, but also meet the child’s needs.
SLPs’ Confidence and Parents’ Perception of SLP Confidence in Personal
Adjustment Counseling. SLPs reported their confidence in providing personal adjustment
counseling, while parents reported their perception of how comfortable their child’s SLP was in
providing personal adjustment counseling. SLPs reported being somewhat confident in providing
personal adjustment counseling, while parents reported their SLP to only be fairly confident in
providing personal adjustment counseling. Again, while the SLPs in this study were not
necessarily the same SLPs that worked with the parents who participated in this study, it is an
important finding that there was a difference in how confident SLPs are and parents perceive
their child’s SLPs when providing personal adjustment counseling.
SLPs and parents then reported SLPs’ confidence levels in providing specific types of
personal adjustment counseling. First, SLPs reported their confidence and parents reported their
child’s SLP’s confidence in demonstrating interest in the caregiver(s)’ emotional well-being.
SLPs reported being fairly confident in demonstrating interest in the caregiver(s)’ emotional
well-being, while parents perceived SLPs to be slightly confident in demonstrating interest in the
caregiver(s)’ emotional well-being. These results are important because it demonstrates a sharp
contrast in what SLPs and parents perceive. Counseling a pediatric patient’s caregiver falls under
the ASHA Scope of Practice for SLPs, so it is an important finding that parents do not perceive
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their SLP to confidently demonstrate interest in their emotional well-being. The data are
consistent with the existing literature which states that “problems identified by parents in their
relationships with professionals include[d] a lack of emotional support, a lack of empathy and
apparent failure to acknowledge parents’ experiential knowledge” (Kirk & Glendinning, 2002, p.
626).
SLPs and parents reported SLP confidence in demonstrating interest in the child’s
emotional well-being. SLPs reported being fairly confident in demonstrating interest in the
child’s emotional well-being and parents perceived their child’s SLP to be somewhat confident
in demonstrating interest in their child’s emotional well-being. Parents perceive their SLP to
have higher levels of confidence in demonstrating interest in the child’s emotional well-being
than in the parents’ emotional well-being. While it is expected that the SLP would have higher
levels of confidence in providing emotional support for their client, there is still a fairly large
difference in reported confidence levels from the SLPs’ perspective to the parent’s perspective in
how confident the SLP is in demonstrating interest in the child and their family’s emotional well-
being. To the best of my knowledge, there is no literature that compares SLPs’ and parents’
perception of SLP confidence levels in providing personal adjustment counseling.
Frequency of Performing Tasks
In this study, I explored the frequency with which SLPs’ provide informational
counseling and personal adjustment counseling. I also explored the relationship of how
frequently SLPs counsel patients to SLPs’ confidence levels when counseling pediatric
tracheostomy patients and their families. In addition, I explored parents’ perceptions of how
frequently SLPs provide both informational and personal adjustment counseling. Finally, I
compared SLPs’ and parents’ perception of how frequently SLPs provide informational and
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personal adjustment counseling within therapy. The specific data will be discussed in the
sections that follow.
SLPs’ Frequency of Counseling
SLPs reported how frequently they provide informational and personal adjustment
counseling. The following sections will explore SLPs’ frequency of providing informational
counseling, providing personal adjustment counseling, and exploring the relationship between
how frequently SLPs counsel patients to how confident they are in counseling pediatric
tracheostomy patients. There is limited research on how frequently SLPs provide these types of
counseling because “direct observation and measurement of counseling skills is challenging”
(Victorino & Hinkle, 2019, p. 110).
SLPs’ Frequency of Providing Informational Counseling. SLPs reported very
frequently providing informational counseling to pediatric patients with tracheostomy tubes. It is
encouraging that SLPs are providing their clients with information regarding their
communication disorder and treatment consistently. SLPs can provide informational counseling
through a variety of techniques.
In order to explore how frequently SLPs provide specific types of informational
counseling, SLPs reported how frequently they provide patient caregiver education prior to the
child’s tracheotomy and provide home-care instruction manuals for the tracheostomy. SLPs
reported occasionally providing these two specific types of informational counseling to pediatric
tracheostomy patients and their families. These two questions had been adapted from Mitchell
and colleagues’ (2013) research to facilitate consistency of medical care for pediatric
tracheostomy patients through specific tasks (p. 6). Mitchell and colleagues’ (2013) concluded
that SLPs should provide families with these specific forms of informational counseling. It is
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important to note, however, that the SLPs that participated in my survey work in a range of
settings and may not be involved in the medical team for a child who will be undergoing
tracheotomy.
I then explored whether or not the frequency of informational counseling was related to
academic preparation through specific classes. First, I compared the frequency of SLPs providing
informational counseling to SLPs who participated in a graduate course in tracheostomy and
ventilation to SLPs who did not participate in a tracheostomy and ventilation course. Next, I
compared the frequency informational counseling provided by SLPs who took a counseling
course specific for SLPs to SLPs who did not participate in a graduate counseling course. I
expected to see an impact on frequency level for SLPs who participated in a tracheostomy and
ventilation course because they would have had more academic knowledge concerning this
specific population. I did not, however, expect to see any impact on frequency of providing
informational counseling for SLPs as a function of their participation in a graduate level
counseling course. The results revealed that there was no statistically significant difference in
frequency levels of providing informational counseling, despite differences in academic
preparation. It is important to note that only three SLPs reported participating in a tracheostomy
and ventilation course, so the small sample size made it harder to detect differences between the
two groups. Overall, it is encouraging that SLPs do not require a graduate course in
tracheostomy and ventilation or counseling in order to very frequently provide informational
counseling. To the best of my knowledge, there is no current literature exploring the relationship
of graduate preparation and frequency levels of providing informational counseling to pediatric
tracheostomy patients. While there is limited research on this topic, the ASHA Scope of Practice
notes that SLPs should engage in “empower[ing] the individual and family to make informed
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decisions related to communication or feeding and swallowing issues” and “educat[ing] the
individual, family, and related community members about communication or feeding and
swallowing disorders” (“Scope of Practice in Speech-Language Pathology,” 2021, para. 33).
SLPs’ Frequency of Providing Personal Adjustment Counseling. SLPs reported
somewhat frequently providing personal adjustment counseling to pediatric tracheostomy
patients and their families. Additionally, it is interesting to note that SLPs provide informational
counseling much more frequently than they provide personal adjustment counseling. It is
important for SLPs to understand that both aspects of informational and personal adjustment
counseling are necessary to include within therapy; SLPs should provide not only information to
the families, but also provide “emotional support … provided to patients and their families as
appropriate” (Strychowsky et al., 2016, p. 252).
I investigated how frequently SLPs provided specific types of personal adjustment
counseling through incorporation of stuffed animals in role play activities to promote
communication about how the child feels about having a tracheostomy tube; incorporation of
story books which depict children with tracheostomy tubes; and inclusion of a group therapy
component. SLPs reported sometimes incorporating stuffed animals as a role play tool; rarely
utilizing pediatric bibliotherapy; and very rarely including a group therapy component. The age
of these clients may be an indicator for the limited inclusion of these specific personal
adjustment counseling methods as many of the SLPs reported working with very young clients.
The young age would make story books and group therapy components less practical for therapy,
while the incorporation of stuffed animals may more easily allow children to express their
emotions.
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Although the present data indicates that these personal adjustment counseling techniques
are not used frequently in therapy, these are incredibly important techniques to help the families
to feel less isolated and more heard within therapy. For pediatric bibliotherapy, Interview Parent
E described to me how meaningful Mattie Breathes: One little boy’s journey, living and
breathing with a tracheostomy by T. L. Loux was to her. As she described the book, she began
crying. The story includes a message for parents that beautifully impacted Parent E and her
family to give them hope throughout their journey. In addition, many children with tracheostomy
tubes have never met another child with a tracheostomy tube. However, children are so excited
to see other children with similar medical backgrounds. Interview Parent D described her son
seeing another child with a tracheostomy tube “and he just kept looking at me and looking at the
boy. And the boy was older, and he was like ‘Mom! Mom! Look! He has a trach too!’” Finally,
while I did not specifically ask about this in the survey, an overarching theme emerged from the
interviews of parents being medical experts and feeling the need to be listened to by their child’s
SLP. The parents spend every day with their child and have an understanding of tendencies and
habits that the SLP should take into consideration when providing therapy.
Next, I explored whether or not the frequency of personal adjustment counseling was
related to academic preparation through specific classes. I expected to see an impact on
frequency of personal adjustment counseling from SLPs who participated in a graduate
counseling course, but the present data indicates there is no impact on the frequency of personal
adjustment counseling between SLPs who participated and those who did not in a tracheostomy
and ventilation course. The results revealed that there were no statistically significant differences
in frequency of providing personal adjustment counseling despite differences in academic
preparation. It is important to note that only two SLPs indicated that they participated in a
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tracheostomy and ventilation course, so the small sample size made it hard to detect differences
between the two groups. The number of individuals decreased as one of the three individuals that
originally indicated they took a course in tracheostomy and ventilation failed to answer this
question resulting in an even smaller sample size. Overall, it is encouraging that SLPs somewhat
frequently provide personal adjustment counseling without having completed a specific graduate
course. To the best of my knowledge, there is no literature investigating the relationship of how
frequently SLPs provide personal adjustment counseling to their graduate preparation. While
there is limited research on this topic, the ASHA Scope of Practices states that SLPs should be
involved in “provid[ing] support and/or peer-to-peer groups for individuals with disorders and
their families” and “discuss, evaluate, and address negative emotions and thoughts related to
communication or feeding and swallowing disorders (“Scope of Practice in Speech-Language
Pathology,” 2021, para. 33).
Comparison of SLPs’ Frequency in Providing Informational Counseling to Personal
Adjustment Counseling. SLPs reported very frequently providing informational counseling and
somewhat frequently providing personal adjustment counseling. Moreover, there was a
statistically significant difference between how frequently SLPs provide informational and
personal adjustment counseling. The data indicates that SLPs more frequently provide
informational counseling than personal adjustment counseling. The results of how frequently
SLPs provide informational and personal adjustment counseling align with SLPs’ confidence
levels in providing these types of counseling, which were described previously. Based on
Luterman’s (2020) assertion that graduate programs more frequently provide graduate students
coursework on informational counseling rather than personal adjustment counseling, SLPs would
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more confidently and more frequently provide informational counseling in therapy sessions (p.
903).
SLPs’ Frequency of Counseling Patients in Relation to Confidence Levels of
Counseling Methods. SLPs reported both their confidence levels in and frequency of providing
informational and personal adjustment counseling. I first explored the relationship between
SLPs’ confidence in and frequency of providing informational counseling. The moderate
statistically significant relationship between confidence and frequency indicated that the SLPs
who were the most confident in providing informational counseling were also the SLPs who
most frequently provided their pediatric tracheostomy patients informational counseling. I then
explored the relationship between SLPs’ confidence in and frequency of providing personal
adjustment counseling. The fairly strong statistically significant relationship indicated that the
SLPs who are most confident in providing personal adjustment counseling were also the SLPs
who most frequently provided personal adjustment counseling. While there were no statistically
significant differences between academic preparation and confidence or frequency of providing
counseling, it is encouraging to find this relationship between confidence and frequency. This
finding suggests that as SLPs gain experience and confidence in working with these children,
they will begin to more frequently provide counseling, as well. Luterman (2020) described the
importance of counseling within therapy for SLPs:
Counseling is not a separate entity in the clinician-client relationship; it is woven
throughout the fabric of the relationship. I think we inherited the notion of counseling as
a separate entity from the medical model of diagnosis where the clinician is seen as the
expert, who first takes a case history, then tests, and then “counsels.” This model lends
itself to counseling as information driven and perhaps advisory. Counseling is as much an
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attitude as it is a set of specific skills. It is an attitude that suffuses all clinical encounters
with compassion and empathy. (p. 904)
As SLPs gain this attitude of compassion and empathy, SLPs may begin to embrace the inclusion
of counseling into the typical “clinician-client relationship.” To the best of my knowledge, there
is no literature investigating the relationship of SLP frequency of counseling pediatric
tracheostomy patients with respect to SLP confidence levels of providing counseling.
Parents’ Perceptions of how Frequently SLPs Provide Counseling
Parents reported how frequently they perceive their child’s SLP to provide both
informational and personal adjustment counseling. The following sections will explore parents’
perceptions of their SLPs’ frequency of providing informational counseling and personal
adjustment counseling.
Parents’ Perception of how Frequently SLPs Provide Informational Counseling.
Parents reported their child’s SLP to rarely provide them with information regarding parent-to-
parent support groups for children with tracheostomy tubes; and rarely provide their child with
information regarding support groups for children with tracheostomy tubes. Parents reported
their child’s SLP to rarely provide these specific types of informational counseling. The age of
the children may be a limiting factor in that many children receive tracheostomy tubes at a young
age and may not be old enough for a support group yet. However, having access to information
about support groups can be an extremely useful tool for many children with tracheostomy tubes
and their families. Interview Parent D was asked about how she gained her knowledge of what a
tracheostomy tube is and how to take care of a child who has a tracheostomy tube. She
responded by explaining that she learned this information through her own personal research in
addition to “join[ing] every Facebook group [she] could find. We have a local Facebook group
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that has probably helped me the most.”
While informational counseling may include a wide range of subjects to discuss with
families and the patient, Interview Parent A noted that it is important for the SLP to be aware of
the quantity and timing of receiving this information because
things may be more overwhelming or that families may not be able to take the same
amount of information that you would expect when you have a kid who is just seeing an
SLP for an SLP and is otherwise doing pretty well. Further, families of children with
medical complexities are keeping track of a lot of things, so just thinking of ways to be
supportive of that… I think just having an understanding for some of that and like
families may need information in smaller chunks, or kids and families may not be as
present as you want them to be.
It is important to be constantly aware of the family’s emotional state when providing
information in order to be the most beneficial for the recipients. To the best of my knowledge,
there is no literature exploring parents’ perception of how frequently their child’s SLP provides
informational counseling.
Parents’ Perceptions of how Frequently SLPs Provide Personal Adjustment
Counseling. Parents indicated that they occasionally feel discouraged when leaving therapy with
the SLP and that their child frequently feels discouraged after therapy with the SLP. The current
data indicates that there needs to be an increase in personal adjustment counseling in therapy to
help children and their families adjust to their tracheostomy tube, while finding a method of
communication to facilitate a positive learning environment.
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Interview Parent B shared her experiences with an SLP, in which she left therapy feeling
incredibly discouraged and unsupported by her child’s SLP. Note that N represents her child’s
name.
When we found out that N wouldn’t be able to use a speaking valve and we urgently
needed to give him a way to communicate with us, we started learning sign and got a ton
of support from our deaf and hard of hearing community, but absolutely zero support
from speech and language pathologists and that was really, really hard… in June and we
took him to the appointment and the speech pathologist came in and I explained to her
that he uses sign language and she kind of brushed us off like they always do and we put
the speaking valve on him and he immediately freaked out and was super, super
distressed in a way that looked very different from the first time he used a speaking valve.
I know that kids sometimes react poorly to speaking valves, but this just felt like a whole
other level and maybe that’s just because I’m his mom, but I was just sitting in that chair
holding him and he was just begging me to take the speaking valve off of his trach and I
was just like I can’t justify my kid being this distressed when he already has a perfectly
appropriate way to communicate with me. We just never got any reprieve from speech
pathologists. She was just like we’ll take it off for like a minute and then we’ll try again. I
walked out of that appointment and called my husband, and I was like I don’t care if the
speaking valve never works. I don’t care if all he does is sign for the rest of his life. I
just—I didn’t feel any support from the person whose job it is to help him communicate
because he wasn’t speaking…. I’ve found that there’s often this huge disconnect between
like well if he won’t speak like we’re going to try to force him to speak. And I’m like
you’re a speech-language pathologist. Your job is to make sure the child has language
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and not spoken English… and that can be really isolating for a parent who’s already
parenting a child who has a condition that already makes their life more isolating… and
it just breaks my heart because he’s thriving and there’s not any acknowledgement from
the community that’s supposed to be helping him communicate.
Parent B explained how her child’s SLP dismissed her feelings and knowledge of her son’s
ability to communicate. Rather than listening to this parent, the SLP left the mother discouraged
and the child distressed during the therapy session. These feelings of discouragement led to
feelings of isolation from their community. While there are many types of personal adjustment
counseling and ways to facilitate a positive environment for both the child and his/her family,
parents reported feeling a need for an increase in personal adjustment counseling within therapy.
To the best of my knowledge, there is no literature investigating parents’ perception of how
frequently their child with a tracheostomy tube provides personal adjustment counseling.
SLPs’ Frequency and Parents’ Perception of how Frequently SLPs Provide Counseling
Again, it is first important to acknowledge that the SLPs who participated in this study
are not necessarily the specific SLPs who currently provide or have provided services to the
children of the parents who participated in this study. In the sections that follow, I will explore
SLPs and parents’ perceptions how frequently SLPs provided informational counseling and
personal adjustment counseling.
SLPs’ Frequency and Parents’ Perception of how Frequently SLPs Provide
Informational Counseling. SLPs reported very frequently providing informational counseling
to pediatric patients with tracheostomy tubes. Parents reported occasionally being provided
informational counseling. This finding is important because parents reported on average
receiving informational counseling less than half of the time and almost half as frequently as
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SLPs reported that they provide this type of counseling. Parents are reporting feeling as if they
lack information on their child’s communication disorder and therapy treatment.
One possible explanation for this difference in perceptions of how frequently SLPs
provide informational counseling could be because of the study participants; the SLPs who
participated in this study are not necessarily the same SLPs who worked with these parents and
their children. The SLPs who participated in this study indicated they have the highest level of
expertise working as a medical speech-language pathologist. The majority of these SLPs who
have experience working with pediatric tracheostomy patients work in major cities who are
associated with the Global Tracheostomy Collaborative. The Global Tracheostomy Collaborative
has 17 member hospitals in North America, six member hospitals in the United Kingdom, and
six member hospitals in Asia Pacific region (“Hospital Members,” 2020). However, children
who have tracheostomy tubes are located all across the world, and not just in these large cities
with member hospitals of the Global Tracheostomy Collaborative. Many families opt to travel to
these cities with professionals who work with this population, however, if travel is not an option,
the SLPs in their geographic region may not have the experience and knowledge on how to
provide informational counseling concerning tracheostomies. To the best of my knowledge there
is no research investigating SLP and parent perceptions of how frequently SLPs provide personal
adjustment counseling.
SLPs’ Frequency and Parents’ Perception of how Frequently SLPs Provide
Personal Adjustment Counseling. SLPs reported somewhat frequently providing personal
adjustment counseling to pediatric tracheostomy patients and their families. Parents reported
their child’s SLP occasionally providing personal adjustment counseling to their child and
themselves. Parents reported on average receiving personal adjustment counseling less than half
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of the time and less frequently than the SLPs reported. It is an important finding that there was a
disconnect in perceptions of the frequency of personal adjustment counseling between SLPs and
parents of children with tracheostomy tubes. In the parent survey, participants were asked if there
was extra information that they would like to share about their experiences with their child’s
SLP. These responses varied from positive to negative experiences. The responses are in
Appendix H.
Implementing more personal adjustment counseling into therapy may result in fewer
negative experiences for both parents and SLPs. The benefits of personal adjustment counseling
in addition to informational counseling will help children with tracheostomy tubes and their
families best adjust to the new technology in a positive manner. To the best of my knowledge,
there is no literature investigating SLPs and parents’ perceptions of how frequently SLPs provide
personal adjustment counseling.
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CHAPTER V: CONCLUSION
The purpose of this study was to investigate the perceptions of the interventions provided
and counseling techniques used by speech-language pathologists (SLPs) to address the emotional
impact for both pediatric patients receiving tracheostomy tubes and their parents/family
caregivers. A second purpose was to investigate the family caregivers’ perspectives of the
counseling methods provided by SLPs to pediatric patients with tracheostomy tubes and their
families, including bibliotherapy, educational products, group therapy, and the use of open-ended
questions. In this chapter, I will present the major conclusions, implications of the findings,
limitations, recommendations for future research, and my final thoughts on this study.
Major Conclusions
The results of this study led to three major conclusions. The first major conclusion is that
there is a relationship between SLPs’ confidence in and frequency of providing counseling to
pediatric tracheostomy patients and their families. SLPs who reported being most confident in
informational counseling were also those who reported most frequently providing informational
counseling. Similarly, SLPs who reported being most confident in personal adjustment
counseling were also those who reported most frequently providing personal adjustment
counseling. In addition, SLPs were more confident in providing informational counseling than
personal adjustment counseling, resulting in SLPs more frequently providing informational
counseling than personal adjustment counseling.
The second major conclusion is that despite differences in their academic preparation
(i.e., completion of a counseling course), SLPs had comparable confidence in and frequency of
providing counseling to pediatric tracheostomy patients and their families. SLPs reported being
fairly confident in providing informational counseling and only somewhat confident in personal
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adjustment counseling whether or not they had completed a graduate counseling course. In terms
of frequency, SLPs reported very frequently providing informational counseling and somewhat
frequently providing personal adjustment counseling whether or not they completed a graduate
counseling course. Whether or not they had completed a counseling course, there were similar
patterns of confidence and frequency of providing these types of counseling.
The third major conclusion is that SLPs’ and parents’ perceptions of counseling differed.
SLPs generally reported higher levels of confidence in providing both informational and personal
adjustment counseling than parents reported their child’s SLP was in providing both types of
counseling. SLPs were fairly confident in providing informational counseling, while parents
perceived their child’s SLP be to somewhat confident. In addition, SLPs were somewhat
confident in providing personal adjustment counseling, while parents perceived their child’s SLP
to only be fairly confident in providing personal adjustment counseling. In terms of frequency,
SLPs reported more frequently providing both informational and personal adjustment counseling
than parents reported. SLPs reported very frequently providing informational counseling;
however, parents reported only occasionally being provided informational counseling. In
addition, SLPs reported somewhat frequently providing personal adjustment counseling. Parents,
however, reported their child’s SLP to only occasionally provide personal adjustment
counseling.
Implications of the Research Findings
The three major conclusions lead to two implications. The first two conclusions lead to
the implication that SLPs may require more practical training in providing personal adjustment
counseling. Regardless of having completed a counseling course, SLPs more confidently and
more frequently provided informational counseling than personal adjustment counseling.
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Luterman (2020) reported that graduate counseling courses mainly discuss informational
counseling with limited coursework regarding personal adjustment counseling (p. 903). In
addition, Beck and Verticchio (2014) researched how SLPs view of both informational and
personal adjustment counseling after taking a course on counseling specific for SLPs and
audiologists. Their results revealed that prior to taking this counseling course, only 36% of these
participants believed personal adjustment counseling to be the most important form of
counseling within therapy; however, this number increased to 72% after participants took this
course (p. 143). Obtaining practical experience providing personal adjustment counseling may
help to increase SLPs’ confidence in providing this type of counseling, which may lead to SLPs
more frequently providing personal adjustment counseling.
The third major conclusion suggests that there needs to be more communication between
SLPs and parents. There is currently a disconnect between SLPs and parents in the perceptions of
both the informational and personal adjustment counseling that is provided to these children and
their families. Therefore, clinicians should establish more communication with the parents,
specifically to explore whether or not their needs are being met.
Limitations
There were several limitations of this study. The first limitation of this study is that the
SLP participants were not necessarily the same SLPs who provided services to the children with
tracheostomy tubes of the parents who completed the survey. Any SLP who has provided
services to the “niche” population was asked to participate in this study, and, in general, the SLP
participants reported having the highest level of expertise working with pediatric tracheostomy
patients. While this was the desired population of this study, many parents who participated in
this study indicated the SLPs who worked with their child had a wide range of experiences
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working with children with tracheostomy tubes. For example, one parent noted “We have had
some good experiences and some horrible ones. I feel that it takes a special breed of SLP to
consider all aspects of the child.” While some children are receiving services from the SLPs who
have the “highest level of expertise,” other families may not have access to these same
professionals. Another parent reported in the survey, “Our SLP is supposedly the most
comfortable providing therapy to trached kids in our small town, but she is clearly not
comfortable.” This limitation exists because I utilized different recruitment methods to reach
SLPs and the parents. Due to this limitation, the experiences of the participants cannot be
generalized to all parents’ experiences with their child’s SLP.
A second limitation was the survey did not measure SLPs’ experience working in the
field. It was an unfortunate oversight that there were no questions measuring how long
participants had worked as an SLP, or specifically worked with pediatric tracheostomy patients.
Therefore, I was unable to explore the impact of experience on SLPs’ confidence in and
frequency of providing both informational and personal adjustment counseling to pediatric
tracheostomy patients and their families.
A third limitation of this study was the limited number of SLPs who reported
participating in a graduate tracheostomy and ventilation course. Due to only three participants
reporting participating in this course at their respective graduate programs, it was difficult to
identify significant differences between the groups. In addition, one of these three individuals did
not finish the survey and the number dropped to two individuals when examining the impact of
academic courses on how frequently SLPs provide personal adjustment counseling. Therefore, it
was difficult to fully understand how academic preparation through a tracheostomy and
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ventilation course influenced confidence and frequency levels in providing both informational
and personal adjustment counseling to pediatric tracheostomy patients.
A final limitation was limited number of parents who participated in follow-up
interviews. Due to the limited resources and time, only a small number of parents were able to
participate in the interview portion of this study. The limited number of interviews is difficult
because their experiences are specific to their families and are not representative of all parents’
experiences.
While there were limitations to this study, the data provided valuable information when
investigating the interventions and counseling methods provided to pediatric patients and their
families, along with the parents’ perceptions of these interventions and counseling methods. The
study added to the limited research on SLPs providing informational and personal adjustment
counseling to pediatric tracheostomy patients and their families and added to the research on
parents’ perspectives of these counseling methods provided by their child’s SLP.
Recommendations for Future Research
Future research could study the specific interventions and counseling methods that
generalist SLPs utilize with the population of pediatric tracheostomy patients and their families
when they encounter these families in regional hospitals. Some parents reported that although
they were working with the “best” of the local SLPs in their region, these professionals still had
little to no experience working with pediatric tracheostomy patients. Researching the
interventions and counseling methods utilized by more generalist SLPs who do not specialize in
working with pediatric tracheostomy patients would provide researchers with a better
understanding of any discrepancies between SLPs’ and parents’ perceptions of the interventions
and counseling methods utilized for this population.
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A second recommendation to expand future research would be to incorporate questions of
SLPs’ experience working in the field. Having access to how long SLPs have been practicing
would allow researchers to investigate how experience and length of time working as an SLP
impacts how confidently and frequently they provide informational and personal adjustment
counseling. As my data showed that differences in academic preparation did not influence
confidence in and frequency of providing both informational and personal adjustment
counseling, it would be interesting to investigate if experience levels influence these factors.
A third recommendation to enhance further research would be to increase the number of
participants of SLPs who completed a graduate tracheostomy and ventilation course. Having a
greater number of participants would allow a more accurate analysis of how academic
preparation might influence confidence in and frequency of providing both informational and
personal adjustment counseling. The number of SLPs who completed tracheostomy and
ventilation courses was so small, it was more difficult to identify significant differences between
subgroups.
A final recommendation would be to increase the availability of interviews to more
parents of children with tracheostomy tubes and invite SLPs to participate in interviews, as well.
This study only provided the opportunity to interview parents of children who currently have a
tracheostomy tube; underwent a tracheotomy in the first two years of life; and was currently five
years or younger. Allowing participants to provide context to their responses and further explain
their experiences working with these children with tracheostomy tubes, or SLPs, respectively,
would lead to greater insight of the client-clinician dynamic within therapy.
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Final Thoughts
My interest in this topic stemmed from an opportunity to shadow an ENT performing a
tracheotomy at the Children’s Healthcare of Atlanta (CHOA) in January 2020. After this
experience, I began researching what tracheostomy tubes are and how they impact
communication when surgically done at such a young age. Tracheotomies in some cases can be a
lifesaving procedure; however, they have many consequences on communicative abilities. The
more I researched these consequences, the more interested I became in learning about the role of
SLPs in working with children with tracheostomies and seeing the emotional toll of the surgery
on both the child and their family. After this experience at CHOA, not only did I know I would
incorporate tracheostomies into my Senior Independent Study, but I also now hope to work in a
pediatric hospital setting in the future.
After researching this topic for months, I have loved being able to better understand the
“trach community” through my survey responses, and even more through the interviews. I am so
appreciative for both the parents and SLPs to have been so genuine and open with me about their
experiences. This research is a step towards bridging any disconnect between SLPs and pediatric
tracheostomy patients to better experiences in speech and language therapy. I am appreciative of
my Senior Independent Study for providing me a challenging experience to investigate a topic
with such limited research and I feel as if this research will aid me in becoming a more
understanding and competent clinician in the future.
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REFERENCES
Abraham, S. (2003). Babies with tracheostomies. The ASHA Leader, 8(5).
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APPENDIX A: SURVEY ITEM: Q10
If willing, please describe the medical condition resulting in your child’s tracheostomy (Select ALL that apply)
• Flappy airway, stenosis, born with hole in heart, premature lungs
• Traumatic intubation after bone marrow transplant secondary to MPS 1
• Post surgical complications
• Intubation injury
• CCHS
• Subglottic stenosis due to prolonged intubation
• Bilateral vocal cord paralysis congenital
• Brain tumor
• In the beginning she was reached because of subglottic stenosis. She grew out of that but has kept the trach due to her severe sleep apnea
• CCHS
• Chronic lung disease and severe sleep obstructive apnea
• Severe Tracheo/Bronchomalacia
• Craniofacial syndrome
• Severe micrognathia & persistent buccopharengial membrane
• Severe chronic obstructive sleep apnea
• Interstitial lung disease
• congenital diaphragmatic hernia leading to pulmonary hypoplasia, pulmonary hypertension
• Mother had polyhydromnous which resulted with baby having issues when born
• Small upper airway, tracheal sleeve
• Skeletal dysplasia resulting in a small rib cage
• Double lung transplant
• Pulmonary hypertension
• CHARGE-like syndrome, unbalanced chromosomal translocation (2p duplication, 7q deletion), severe subglottic stenosis
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• Chronic Lung Disease
• CHD, airway malacia
• Underlying neuromuscular disease in addition to airway collapse
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APPENDIX B: SLP SURVEY INSTRUMENT
CONSENT TO PARTICIPATE IN A RESEARCH STUDY
THE COLLEGE OF WOOSTER
Counseling Used by Speech-Language Pathologists for Pediatric Tracheostomy Patients Principal Investigator: Meghan Botsch Purpose You are being asked to participate in a research study. We are investigating the confidence of professional speech-language pathologists in treating pediatric tracheostomy patients and the counseling strategies they utilize in therapy for pediatric patients with tracheostomy tubes and their families. For your information, a second survey will investigate parents of children with tracheostomy tubes’ perceptions of the amount and types of counseling strategies, including informational and personal adjustment counseling, utilized by speech-language pathologists when treating these patients. Procedures If you decide to volunteer, you will be asked to answer several questions about yourself, your child, and your experience with your child’s current speech-language pathologist. Each survey will take approximately 10 minutes to complete. Risks No expected risks to participate in this study. However, some participants may reflect on past experiences with clients’ medical complexities, which may be associated with negative emotions such as grief or anxiety. You may choose not to answer individual questions, and you may quit the survey at any time. Benefits There are no direct benefits to you for your participation. An indirect benefit is that we learn more about how parents perceive speech-language pathologists’ counseling strategies, which could result in the future use of more effective counseling practices by speech-language pathologists. Compensation There is no compensation associated with participation in this study. Confidentiality We will not be collecting any identifying information; therefore, all data are anonymous. Costs There is no cost to you beyond the time and effort required to complete the procedure described above. Right to Refuse or Withdraw
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You may refuse to participate in the study. If you decide to participate, you may change your mind and withdraw at any point during the study without consequence. Questions If you have any questions, you can contact me by my email at [email protected]. You may also contact my advisors, Donald Goldberg, Ph.D., CCC-SLP/A ([email protected] or [email protected]); or Joan Furey, Ph.D., CCC-SLP ([email protected]).
o I agree (1)
o I do not agree (2)
Page Break
112
Q2 Are you a licensed and/or ASHA-certified SLP?
o Yes (1)
o No (2)
Skip To: Q60 If Are you a licensed and/or ASHA-certified SLP? = No
Q3 Which of the follow describes your primary work site?
o Medical Setting (1)
o Private Practice (2)
o School-Based (3)
o Speech and Hearing Clinic (4)
o Other, please describe: (5) ________________________________________________
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Q4 Please rate your level of expertise as an SLP is in medical speech-language pathology? (0
representing "No Expertise", 100 representing "Highest Level of Expertise")
0 10 20 30 40 50 60 70 80 90 100
()
Q5 Did your graduate school program offer any dedicated any course(s) regarding tracheostomy
and ventilation?
o Yes (1)
o No (2)
Skip To: Q6 If Did your graduate school program offer any dedicated any course(s) regarding tracheostomy and ven... = Yes Skip To: Q7 If Did your graduate school program offer any dedicated any course(s) regarding tracheostomy and ven... = No
114
Q6 Were the course(s) offered at your graduate program regarding tracheostomy and ventilation
required or elective?
o Required (1)
o Elective (2)
Q7 Did your graduate school program offer any dedicated class lectures regarding tracheostomy
and ventilation?
o Yes (1)
o No (2)
Skip To: Q9 If Did your graduate school program offer any dedicated class lectures regarding tracheostomy and ve... = No
115
Q8 Were the class lectures offered at your graduate program regarding tracheostomy and
ventilation required or elective?
o Required (1)
o Elective (2)
Q9 Did your graduate school program offer any practicum opportunities/placement(s) working
with tracheostomy and ventilation patients?
o Yes (1)
o No (2)
o Unable to recall (3)
Skip To: Q10 If Did your graduate school program offer any practicum opportunities/placement(s) working with trac... = Yes Skip To: Q11 If Did your graduate school program offer any practicum opportunities/placement(s) working with trac... != Yes
116
Q10 Did you participate in the practicum opportunities/placement(s) offered by your graduate
program working with tracheostomy and ventilation patients?
o Yes (1)
o No (2)
Q11 Did your graduate school program offer a class regarding counseling methods specifically
for SLPs?
o Yes (1)
o No (2)
Skip To: Q12 If Did your graduate school program offer a class regarding counseling methods specifically for SLPs? = Yes Skip To: Q13 If Did your graduate school program offer a class regarding counseling methods specifically for SLPs? = No
117
Q12 Were the class lectures offered at your graduate program regarding counseling methods
specifically for SLPs required or elective?
o Required (1)
o Elective (2)
Q13 Did you take a class regarding counseling methods in a department/program outside of
speech-language pathology (e.g., psychology, education)?
o Yes (1)
o No (2)
118
Q14 In the last 12 months, please estimate the number of adult and pediatric patients with
tracheostomy tubes that were/are on your caseload:
▢ Adult Patients: (1) ________________________________________________
▢ Pediatric Patients: (2) ________________________________________________
Q15 How did you gain experience working with pediatric tracheostomy patients? (Select ALL
that apply)
▢ Academic preparation (1)
▢ Clinical Practicum (2)
▢ Externship (3)
▢ Internship (4)
▢ On-the-Job Training (5)
▢ Other (please describe): (6) ________________________________________________
119
Q16 Typically, what is/are the primary long-term objective(s) for pediatric tracheostomy patients
on your caseload? (Select ALL that apply)
▢ Feeding/swallowing (1)
▢ Communication (2)
▢ Other (3) ________________________________________________
Q17 Rate your confidence on the following aspects of regarding working with a pediatric tracheostomy patient:
120
Extremely
Confident (1)
Somewhat
Confident (2) Neutral (3)
Somewhat
Not
Confident (4)
Extremely
Not
Confident (5)
Suctioning the
patient, if
necessary (1) o o o o o
Recognizing
distress in the
patient (2) o o o o o
Conducting
evaluations
for one-way
speaking
valves (3)
o o o o o
Staying calm
in medical
emergencies
(4)
o o o o o
121
Understanding
the patient's
medical
history (5)
o o o o o
Q18 At what age are pediatric tracheostomy patients "typically" referred to you for services?
▼ 0-3 Months (1) ... 11+ Years (9)
122
Q19 Which of the following professionals do you collaborate with in evaluating and/or treating
your patients with tracheostomy tubes? (Select ALL that apply)
▢ I do not typically work with other professional colleagues (1)
▢ Child Life Specialist/s (2)
▢ Nurse/s (3)
▢ Occupational Therapist/s (4)
▢ Otolaryngologist or ENT Physician/s (5)
▢ Pediatrician/s (6)
▢ Physician Assistant/s (7)
▢ Physical Therapist/s (8)
▢ Psychologist/s or Counselor/s (9)
▢ Pulmonologist/s (10)
▢ Respiratory Therapist/s (11)
▢ Social Worker/s (12)
▢ Other (Please describe): (13) ________________________________________________
123
Q20 The following four questions have been modified from the Key Statements that achieved
consensus in Mitchell and colleagues (2011) Clinical Consensus Statement: Tracheostomy Care:
124
Always (1) Frequently
(2)
Occasionally
(3) Rarely (4) Never (5)
How frequently do
you routinely
provide patient
caregiver education
prior to your
patient's
tracheotomy
procedure? (1)
o o o o o
How frequently do
you routinely
perform a
communication
assessment for
your pediatric
patients prior to the
tracheotomy
procedure? (2)
o o o o o
125
How frequently
are you routinely
involved in the
evaluation of the
child's caregiver in
his/her competency
of tracheostomy
care procedures
prior to their child's
discharge from the
hospital? (3)
o o o o o
How frequently do
you routinely
provide any home
care instruction
manuals for
tracheostomy care
prior to your
pediatric
tracheostomy
patient's family
discharge from the
hospital? (4)
o o o o o
126
Q21 Please describe the range of ways in which you include the parent-caregiver in therapy?
o I prefer not to answer (1)
o Please specify: (2) ________________________________________________
Q22 How often are your "typical" parent-caregiver/s involved in therapy activities during in-
patient treatment for pediatric tracheostomy patients?
o Always (1)
o Frequently (2)
o Occasionally (3)
o Rarely (4)
o Never (5)
o Not Applicable (6)
127
Q23 How often are your "typical" parent-caregiver/s involved in therapy activities during out-
patient treatment for pediatric tracheostomy patients?
o Always (1)
o Frequently (2)
o Occasionally (3)
o Rarely (4)
o Never (5)
o Not Applicable (6)
Q24 Do you care to describe or discuss the frequency of parent-caregiver involvement in therapy
activities?
o Yes (if Yes, please explain): (1) ________________________________________________
o No (2)
128
Q25 How frequently do you typically work with a pediatric patient with a tracheostomy tube
during in-patient treatment? Please also indicate typical length of each session regarding your
choice:
o I do not typically provide in-patient care (1)
o Daily/Length (2) ________________________________________________
o 2-3 times a week/Length (3) ________________________________________________
o 4-6 times a week/Length (4) ________________________________________________
o Weekly/Length (5) ________________________________________________
o Every two weeks/Length (6) ________________________________________________
o Other, please describe: (7) ________________________________________________
129
Q26 What is the typical number of treatment sessions for a pediatric patient with a
tracheostomy tube during in-patient treatment?
o I do not typically provide in-patient care (1)
o 1-10 sessions (2)
o 11-20 sessions (3)
o 21-30 sessions (4)
o 31+ sessions (5)
130
Q27 How frequently do you typically work with a pediatric child with a tracheostomy tube
during out-patient treatment? Please indicate typical length of each session regarding your
choice:
o I do not typically do out-patient care (1)
o Daily/Length (2) ________________________________________________
o 2-3 times a week/Length (3) ________________________________________________
o 4-6 times a week/Length (4) ________________________________________________
o Weekly/Length (5) ________________________________________________
o Every two weeks/Length (6) ________________________________________________
o Other, please describe: (7) ________________________________________________
131
Q28 What is the typical number of treatment sessions for a pediatric child with a tracheostomy
tube during out-patient treatment?
o I do not typically work in out-patient care (1)
o 1-10 sessions (2)
o 11-20 sessions (3)
o 21-30 sessions (4)
o 31+ sessions (5)
Q29 What methods of communication do you work with when treating a pediatric tracheostomy
patient? (Select ALL that apply):
▢ Leak/whisper speech (1)
▢ Finger occlusion (2)
▢ Passy-Muir speaking valve (3)
▢ AAC device (4)
▢ Other (5) ________________________________________________
132
Q30 How frequently do you conduct evaluations for pediatric tracheostomy patients to use a
one-way speaking valve?
o Always (1)
o Frequently (2)
o Occasionally (3)
o Rarely (4)
o Never (5)
Q31 What methods do you typically utilize to relax your patient during one-way speaking valve
evaluations?
________________________________________________________________
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Q32 Informational counseling is often utilized by SLPs to assist clients and their families by
providing sufficient information and understanding regarding a specific communication disorder,
in addition to providing information on the treatment plan for said communication disorder
(Beck & Verticchio, 2014). For pediatric patients with tracheostomies, informational counseling
may include, but is not limited to educational products, parent trainings in the hospital,
brochures, or information verbally provided by and given from medical and non-medical
professionals working with the child.
Based on the provided definition of Informational Counseling, how confident do you feel in
delivering Informational Counseling to pediatric patients with tracheostomy tubes?
o Extremely Confident (1)
o Somewhat Confident (2)
o Neutral (3)
o Somewhat Not Confident (4)
o Extremely Not Confident (5)
134
Q33 Based on the previous definition of Informational Counseling, using the scale below, please
indicate how frequently you incorporate informational counseling into therapy, with 0
representing "Never" and 100 representing "Always" when providing services to pediatric
patients with tracheostomy tubes:
0 10 20 30 40 50 60 70 80 90 100
1 ()
135
Q34 Personal adjustment counseling refers “to helping clients cope with attitudes, feelings,
problems associated with communication disorder; using active listening and being comfortable
with silence; being able to resonate with the client and build rapport; and providing hope and
optimism” (Beck & Verticchio, 2014, p. 140). For pediatric patients with tracheostomies,
personal adjustment counseling may include, but is not limited to bibliotherapy, use of stuffed
animals, group therapy, and/or asking the child open- ended questions.
Based on the provided definition of Personal Adjustment Counseling, how confident do you feel
in delivering Personal Adjustment Counseling to pediatric patients with tracheostomy tubes?
o Extremely Confident (1)
o Somewhat Confident (2)
o Neutral (3)
o Somewhat Not Confident (4)
o Extremely Not Confident (5)
136
Q35 Based on the previous definition of Personal Adjustment Counseling, select how frequently
you implement personal adjustment counseling into therapy, with 0 representing "Never" and
100 representing "Always" when providing services to pediatric patients with tracheostomy
tubes:
0 10 20 30 40 50 60 70 80 90 100
1 ()
137
Q36 How do you provide your client and their family members with information regarding
therapy? (select ALL that apply)
▢ Informational documents (1)
▢ Parent-training information sessions (2)
▢ Verbal information (3)
▢ Visual demonstration accompanying props, please specify: (4) ________________________________________________
▢ Other, please specify: (5) ________________________________________________
138
Q37 Based on the following scale, how confident do you feel regarding the following:
Extremely Confident (1)
Somewhat Confident (2) Neutral (3)
Somewhat Not
Confident (4)
Extremely Not
Confident (5)
Providing sufficient
parent-training regarding therapy
activities to do at home (1)
o o o o o
Demonstrating interest in the caregiver(s)' emotional
well-being (2) o o o o o
Demonstrating interest in the
client's emotional
well-being (3) o o o o o
Routinely providing
materials to the client and his/her family
(4)
o o o o o
139
Q38 How frequently do your pediatric tracheostomy patients' speech-language therapy sessions
typically include a group therapy component?
o Always (1)
o Frequently (2)
o Occasionally (3)
o Rarely (4)
o Never (5)
o Not Applicable (6)
Q39 How frequently do you incorporate story books which depict children with tracheostomy
tubes in therapy?
o Always (1)
o Frequently (2)
o Occasionally (3)
o Rarely (4)
o Never (5)
140
Q40 How familiar are you with the following story book regarding children with tracheostomy
tubes?
Hiya Moriah by Victoria Nelson
o Extremely Familiar (1)
o Very Familiar (2)
o Moderately Familiar (3)
o Slightly Familiar (4)
o Not Familiar at All (5)
Q41 How familiar are you with the following story book regarding children with tracheostomy tubes?
Gerry the Giraffe and his Super Awesome but Sometimes Icky Tracheostomy by Rebekah Foguth
o Extremely Familiar (1)
o Very Familiar (2)
o Moderately Familiar (3)
o Slightly Familiar (4)
o Not Familiar at All (5)
141
Q42 How familiar are you with the following story book regarding children with tracheostomy tubes?
Tracy's Tracheostomy by Wendy J Hall
o Extremely Familiar (1)
o Very Familiar (2)
o Moderately Familiar (3)
o Slightly Familiar (4)
o Not Familiar at All (5)
Q43 How familiar are you with the following story book regarding children with tracheostomy
tubes?
Channel your Inner Superstar by Jennifer Butler Ellis
o Extremely Familiar (1)
o Very Familiar (2)
o Moderately Familiar (3)
o Slightly Familiar (4)
o Not Familiar at All (5)
142
Q44 How frequently do you incorporate stuffed animals in role play activities to promote
communication about how your client feels about having a tracheostomy tube?
o Always (1)
o Frequently (2)
o Occasionally (3)
o Rarely (4)
o Never (5)
Q45 How familiar are you with the following stuffed animal?
Tubie Friends
o Extremely Familiar (1)
o Very Familiar (2)
o Moderately Familiar (3)
o Slightly Familiar (4)
o Not Familiar at All (5)
143
Q46
How familiar are you with the following stuffed animal?
Toby Tracheapuppet
o Extremely Familiar (1)
o Very Familiar (2)
o Moderately Familiar (3)
o Slightly Familiar (4)
o Not Familiar at All (5)
Q47 How familiar are you with the following stuffed animal?
Toby Tracheasaurus
o Extremely Familiar (1)
o Very Familiar (2)
o Moderately Familiar (3)
o Slightly Familiar (4)
o Not Familiar at All (5)
144
Q48 How familiar are you with the following Passy-Muir educational tools?
Toby Tracheasaurus & Friends Coloring & Activity Book
o Extremely Familiar (1)
o Very Familiar (2)
o Moderately Familiar (3)
o Slightly Familiar (4)
o Not Familiar at All (5)
Q49 How familiar are you with the following Passy-Muir educational tool?
Tracheostomy P.A.M. (Pediatric Airway Model)
o Extremely Familiar (1)
o Very Familiar (2)
o Moderately Familiar (3)
o Slightly Familiar (4)
o Not Familiar at All (5)
145
Q50 How familiar are you with the following Passy-Muir educational tool?
Tracheostomy T.O.M. (Tracheostomy Observation Model)
o Extremely Familiar (1)
o Very Familiar (2)
o Moderately Familiar (3)
o Slightly Familiar (4)
o Not Familiar at All (5)
Q51 How familiar are you with the following Passy-Muir educational tool?
Patient Education Handouts
o Extremely Familiar (1)
o Very Familiar (2)
o Moderately Familiar (3)
o Slightly Familiar (4)
o Not Familiar at All (5)
146
Q52 How familiar are you with the following Passy-Muir educational tool?
TRACHTOOLS App
o Extremely Familiar (1)
o Very Familiar (2)
o Moderately Familiar (3)
o Slightly Familiar (4)
o Not Familiar at All (5)
Q53 How often do you use open-ended questions when talking about emotions during therapy
sessions for your pediatric tracheostomy patients with 0 representing "Never" and 100
representing "Always"?
0 10 20 30 40 50 60 70 80 90 100
1 ()
147
Q54 Do you have a favorite open-ended question that addresses your client's emotions?
Q55 Please rate each of the following scenarios:
148
Always
(1)
Frequently
(2)
Occasionally
(3) Rarely (4) Never (5)
Not
Applicable
(6)
I typically
feel
overwhelmed
when
providing
therapy to
pediatric
tracheostomy
patients (1)
o o o o o o
I routinely
provide
information
regarding
parent-to-
parent
support
groups (2)
o o o o o o
149
I routinely
provide
information
regarding
support
groups for
children (3)
o o o o o o
I consistently
help provide
counseling to
the parents of
pediatric
tracheostomy
patients (4)
o o o o o o
I consistently
provide
counseling to
pediatric
tracheostomy
patients on
my caseload
(5)
o o o o o o
150
Q56 Do you have any specific therapy activities that help address children's emotions?
o Yes, Please explain (1) ________________________________________________
o No (2)
Q57 How has the recent COVID-19 pandemic affected how you address the emotional well-
being of your patients/their family members?
o Please explain (1) ________________________________________________
o I prefer not to answer (2)
Q58 How has the recent COVID-19 pandemic affected the delivery of the speech-language
therapy services that you provide?
o Please explain (1) ________________________________________________
o I prefer not to answer (2)
151
Q59 Is there anything else that you would like to share regarding your experiences working with pediatric tracheostomy patients and their families?
o Yes, please explain (1) ________________________________________________
o No (2)
Q60 Thank you for taking the time to participate in this study. A summary of the results of this
study will be available in spring 2021. If you would like to view the results, please contact the
researcher using the email below. Again, all participants' names and data have been kept
anonymous throughout the entire research process. Your participation has been greatly
appreciated.
Researcher's contact: [email protected]
Advisors' contact: [email protected] or [email protected]; [email protected]
Q61 The following materials may be beneficial for your pediatric patients with tracheostomy
tubes and their families to adjust to having a tracheostomy tube, along with useful materials and
information:
152
Books for parents:
Special by Melanie Dimmit
Can't Breathe by Laesa Faith Kim
Children's books:
Hiya Moriah by Victoria Nelson
Gerry the Giraffe and his Super Awesome but Sometimes Icky Tracheostomy by Rebekah
Foguth
Tracy's Tracheostomy by Wendy Hall
Channel your Inner Superstar by Wendy Hall
The Able Fables book series by Dr. Nicole Julia
Film:
Float on Disney+
Stuffed animals and other toys:
Tubie Friends
Toby Tracheapuppet
Toby Tracheasaurus
Toby Tracheasaurus Friends Coloring & Activity Book
Extra helpful tools:
Patient Education Handouts on the Passy-Muir website
TRACHTOOLS App developed by Passy-Muir
End of Block: Default Question Block
153
APPENDIX C: PARENT SURVEY INSTRUMENT
CONSENT TO PARTICIPATE IN A RESEARCH STUDY
THE COLLEGE OF WOOSTER
Parental Perceptions of Counseling Used by Speech-Language Pathologists for Pediatric Tracheostomy Patients Principal Investigator: Meghan Botsch Purpose You are being asked to participate in a research study. We are investigating parents’ perceptions of the amount and types of counseling strategies, including informational and personal adjustment counseling, utilized by speech-language pathologists when treating pediatric tracheostomy patients. For your information, a second survey will investigate the confidence of speech-language pathologists in treating pediatric tracheostomy patients and will also investigate the counseling strategies they utilize when treating these patients and their families. Procedures If you decide to volunteer, you will be asked to answer several questions about yourself, your child, and your experience with your child’s current speech-language pathologist. Each survey will take approximately 10 minutes to complete. Risks There are no expected risks to participate in this study. However, some participants may reflect on past experiences with their child’s medical complexities, which may be associated with negative emotions such as grief of anxiety. You may choose not to answer individual questions, and you may quit the survey at any time. Benefits There are no direct benefits to you for your participation. An indirect benefit is that we learn more about how parents perceive speech-language pathologists’ counseling strategies, which could result in the future use of more effective counseling practices by speech-language pathologists. Compensation There is no compensation associated with participation in this study. Confidentiality We will not be collecting any identifying information; therefore, all data are anonymous. If desired to further explain your experiences via telephone/Zoom interview, no identifying information will be shared in the study. Costs
154
There is no cost to you beyond the time and effort required to complete the procedure described above. Right to Refuse or Withdraw You may refuse to participate in the study. If you decide to participate, you may change your mind and withdraw at any point during the study without consequence. Questions If you have any questions, you can contact me by my email at [email protected]. You may also contact my advisors, Donald Goldberg, Ph.D., CCC-SLP/A ([email protected] or [email protected]); or Joan Furey, Ph.D., CCC-SLP ([email protected]).
o I agree (1)
o I do not agree (2)
Skip To: Q2 If CONSENT TO PARTICIPATE IN A RESEARCH STUDY THE COLLEGE OF WOOSTER Parental Perceptions of Counsel... = I agree Skip To: End of Survey If CONSENT TO PARTICIPATE IN A RESEARCH STUDY THE COLLEGE OF WOOSTER Parental Perceptions of Counsel... = I do not agree
155
Q2 What is your relationship to the child with a tracheostomy tube?
o Mother (1)
o Father (2)
o Other, please describe: (3) ________________________________________________
Q3 How old is your child currently?
▼ 0-6 Months (1) ... 11+ Years (8)
Q4 Does your child currently have a tracheostomy in place?
o Yes (1)
o No (2)
Skip To: Q5 If Does your child currently have a tracheostomy in place? = No Skip To: Q6 If Does your child currently have a tracheostomy in place? = Yes
156
Q5 At what age was your child extubated?
▼ 0-6 Months (1) ... 11+ Years (8)
Q6 When did your child undergo tracheotomy?
▼ 0-6 Months (1) ... 11+ Years (8)
Q7 How long did your child stay in the hospital post-tracheotomy?
________________________________________________________________
157
Q8 Who was on your team in the hospital? (Select ALL that apply):
▢ Child Life Specialist/s (1)
▢ Nurse/s (2)
▢ Occupational Therapist/s (3)
▢ Otolaryngologist or ENT Physician/s (4)
▢ Pediatrician/s (5)
▢ Physician Assistant/s (6)
▢ Physical Therapist/s (7)
▢ Psychologist/s or Counselor/s (8)
▢ Pulmonologist/s (9)
▢ Respiratory therapist/s (10)
▢ Social worker/s (11)
▢ Speech-language pathologist/s (12)
▢ Other: (13) ________________________________________________
158
Q9 Describe your child's ventilation history (Select ALL that apply)
▢ Has never been ventilated (1)
▢ Is currently ventilated (2)
▢ Has been, but is no longer ventilated (3)
Q10 If willing, please describe the medical condition resulting in your child's tracheostomy (Select ALL that apply)
▢ Accident (1)
▢ Additional underlying medical conditions (2)
▢ Inability to clear mucus from the lungs and airway (3)
▢ Long-term help with breathing with ventilator (4)
▢ Prematurity (5)
▢ Upper airway blockage (6)
▢ Prefer not to respond (7)
▢ Other: (8) ________________________________________________
159
Q11 Does your child currently have medical/nursing assistance providing in home-care?
o Yes (1)
o No (2)
Skip To: Q12 If Does your child currently have medical/nursing assistance providing in home-care? = Yes Skip To: Q13 If Does your child currently have medical/nursing assistance providing in home-care? = No
Q12 Please describe the medical/nursing assistance your child receives:
o Daytime medical/nursing care (1)
o Nighttime medical/nursing care (2)
o Daytime and nighttime medical/nursing care (3)
Display This Question:
If How old is your child currently? = 5-6 Years
And How old is your child currently? = 7-8 Years And How old is your child currently? = 9-10 Years
And How old is your child currently? = 11+ Years
160
Q13 Does your child have medical care from a caregiver when at school?
o Yes (1)
o No (2)
161
Q14 On the following scale:
Completely
medically
focused (1)
Majority
medically
focus (2)
Equally
balanced
between
medical and
parental
focus (3)
Majority
parental
focus (4)
Completely
parental
focused (5)
As the parent
of a child
with a
tracheostomy,
describe the
focus of your
attention in
your
relationship
with your
child (1)
o o o o o
162
Q15 Post-tracheotomy, please describe the most valuable advice provided by any medical
professional in the transition from the hospital into home life
o I prefer not to answer (1)
o Please explain: (2) ________________________________________________
163
Q16 Which of the following professionals have provided support to your family (Select ALL that
apply)
▢ Child Life Specialist/s (1)
▢ Nurse/s (2)
▢ Occupational Therapist/s (3)
▢ Otolaryngologists or ENT physician/s (4)
▢ Pediatrician/s (5)
▢ Physician Assistant/s (6)
▢ Physical Therapist/s (7)
▢ Psychologist/s or Counselor/s (8)
▢ Pulmonologist/s (9)
▢ Respiratory therapist/s (10)
▢ Speech-language pathologist/s (11)
▢ Social worker/s (12)
▢ Other: (13) ________________________________________________
164
Q17 The following four questions have been modified from the Key Statements that achieved
consensus in Mitchell and colleagues' (2011) Clinical Consensus Statement: Tracheostomy
Care:
Were you provided patient caregiver education prior to your child's tracheotomy procedure?
o Yes (1)
o No (2)
o Unable to recall (3)
165
Q18 Was a communication assessment performed for your child prior to the tracheotomy
procedure?
o Yes (1)
o No (2)
o Unable to recall (3)
Q19 As the child's caregiver, were you evaluated on your competency of tracheostomy care
procedures prior to your child's discharge from the hospital?
o Yes (1)
o No (2)
o Unable to recall (3)
166
Q20 Were you provided with any home care instruction manuals for tracheostomy care prior to
your child's discharge from the hospital?
o Yes (1)
o No (2)
o Unable to recall (3)
Q21 Does your child currently receive or has ever received communication services from a
speech-language pathologist?
o Yes (1)
o No (2)
167
Q22 Does your child currently receive or has ever received feeding/swallowing services from a
speech-language pathologist?
o Yes (1)
o No (2)
Q23 At what age did your child begin receiving communication and/or feeding/swallowing
services from a speech-language pathologist?
▼ 0-6 Months (1) ... 11+ Years (8)
Q24 Have you been or are you currently involved in the therapy your child receives from a
speech-language pathologist (for example: suctioning; participating in games/activities; etc.)
o Yes, please explain: (1) ________________________________________________
o No (2)
168
Q25 What method(s) of communication does your child use? (Select ALL that apply):
▢ Leak/whisper speech (1)
▢ Finger occlusion (2)
▢ Passy-Muir Speaking Valve (3)
▢ AAC device (4)
▢ Other (5) ________________________________________________
Q26 Has your child been evaluated for a one-way speaking valve?
o Yes (1)
o No (2)
o Unable to recall (3)
Skip To: Q27 If Has your child been evaluated for a one-way speaking valve? = Yes
169
Q27 At what age did your child begin using a one-way speaking valve?
▼ 0-6 Months (1) ... 11+ Years (8)
Q28 Informational counseling is often utilized by speech-language pathologists to assist clients
and their families by providing sufficient information and understanding regarding a specific
communication disorder, in addition to providing information on the treatment plan for said
communication disorder (Beck & Verticchio, 2014). For pediatric patients with tracheostomies,
informational counseling may include, but is not limited to information verbally provided by and
given from medical and non-medical professionals working with the child, parent trainings in the
hospital, brochures, or educational products.
Based on the given definition of Informational Counseling, please indicate how frequently does
your child's speech-language pathologist provide Informational Counseling into therapy, with 0
170
representing "Never" and 100 representing "Always":
0 10 20 30 40 50 60 70 80 90 100
()
Q29 Based on the given definition of Informational Counseling, how would you describe your
child's speech-language pathologist's comfort level when providing Informational Counseling?
o Extremely Comfortable (1)
o Moderately Comfortable (2)
o Neutral (3)
o Moderately Uncomfortable (4)
o Extremely Uncomfortable (5)
171
Q30 Personal adjustment counseling refers “to helping clients cope with attitudes, feelings,
problems associated with communication disorder; using active listening and being comfortable
with silence; being able to resonate with the client and build rapport; and providing hope and
optimism” (Beck and Verticchio, 2014, p. 140). Personal adjustment counseling methods for
children with tracheostomies may include, but are not limited to bibliotherapy, use of stuffed
animals, group therapy, and/or asking the child open-ended questions.
Based on the given definition of Personal Adjustment Counseling, please indicate
how frequently does your child's speech-language pathologist provide Personal Adjustment
Counseling, with 0 representing "Never" and 100 representing "Always":
0 10 20 30 40 50 60 70 80 90 100
()
172
Q31 Based on the given definition of Personal Adjustment Counseling, how would you describe your child's speech-language pathologist's comfort level when providing Personal Adjustment Counseling?
o Extremely Comfortable (1)
o Moderately comfortable (2)
o Neutral (3)
o Moderately uncomfortable (4)
o Extremely uncomfortable (5)
Q32 Based on the previous definitions of informational and personal adjustment counseling, how would you describe the balance of the speech-language pathologist's counseling delivery model:
o Exclusively Informational Counseling (1)
o Mostly Informational Counseling (2)
o Even Mixture (3)
o Mostly Personal Adjustment Counseling (4)
o Exclusively Personal Adjustment Counseling (5)
173
Q33 How does your speech-language pathologist provide you with information regarding your
child's therapy? (select ALL that apply)
▢ Informational documents (1)
▢ Parent-training information sessions (2)
▢ Verbal information (3)
▢ Visual demonstration (4)
▢ Visual demonstration accompanying props, please specify: (5) ________________________________________________
▢ Other, please specify: (6) ________________________________________________
Q34 Based on the following scale, how confident do you believe the speech-language pathologist was regarding:
174
Extremely
Confident (1)
Somewhat
Confident (2) Neutral (3)
Somewhat
Not
Confident (4)
Extremely
Not
Confident (5)
Routinely
providing
teaching
materials for
my child and
me (1)
o o o o o
Routinely
providing
sufficient
parent-training
for me to
effectively use
teaching
materials at
home (2)
o o o o o
175
Demonstrating
interest in
your
emotional
well-being (3)
o o o o o
Demonstrating
interest in
your child’s
emotional
well-being (4)
o o o o o
Providing
therapy to
your child (5) o o o o o
176
Q35 How frequently do your child's speech-language therapy sessions typically include a group
therapy component?
o Always (1)
o Frequently (2)
o Occasionally (3)
o Rarely (4)
o Never (5)
Q36 Does the speech-language pathologist use story books with kids with tracheostomy tubes in
therapy?
o Yes (1)
o No (2)
o Unable to recall (3)
Skip To: Q37 If Does the speech-language pathologist use story books with kids with tracheostomy tubes in therapy? = Yes
177
Q37 Has your speech-language pathologist used any of the following story books in therapy?
(Select ALL that apply)
▢ Hiya Moriah by Victoria Nelson (1)
▢ Gerry the Giraffe and his Super Awesome but Sometimes Icky Tracheostomy by
Rebekah Foguth (2)
▢ Tracy's Tracheostomy by Wendy J. Hall (3)
▢ Channel your Inner Superstar by Jennifer Butler Ellis (4)
▢ None of the above (Please specify any story books used in therapy that you
recall): (5) ________________________________________________
Q38 Does the speech-language pathologist use story books that are not specific to having a
tracheostomy tube, but the characters may have other challenges in therapy?
o Yes (if Yes, please specify which books): (1) ________________________________________________
o No (2)
178
Q39 Does the speech-language pathologist incorporate stuffed animals to promote
communication about how your child feels into therapy?
o Yes, general stuffed animals (1)
o Yes, specific to stuffed animals with tracheostomy tubes (2)
o No (3)
Q40 Does the speech-language pathologist incorporate toys in role play activities to promote
communication about how your child feels into therapy?
o Yes, general toys (1)
o Yes, specific to toys with tracheostomy tubes (2)
o No (3)
Q41 How often does the speech-language pathologist use open-ended questions when talking
179
about emotions during therapy sessions with 0 representing "Never" and 100 representing
"Always"?
0 10 20 30 40 50 60 70 80 90 100
()
Q42 Based on the given scale, please answer the following questions:
180
Always (1)
Frequently (2)
Occasionally (3) Rarely (4) Never (5)
Not Applicable
(6)
I typically feel
discouraged when leaving
therapy sessions with the speech-language
pathologist (1)
o o o o o o
My child typically
feels discouraged
when leaving therapy
sessions with the speech-language
pathologist (2)
o o o o o o
I was routinely provided
information regarding parent-to-
parent support
groups for children with tracheostomy
tubes (3)
o o o o o o
181
My child was
routinely provided
information regarding support
groups for children with tracheostomy
tubes (4)
o o o o o o
The speech-language
pathologist consistently
provided counseling to
me during therapy (5)
o o o o o o
The speech-language
pathologist consistently
provided counseling to
my child during
therapy (6)
o o o o o o
182
Q43 Has your child ever met another individual with a tracheostomy tube?
o Yes (1)
o No (2)
Skip To: Q44 If Has your child ever met another individual with a tracheostomy tube? = Yes
Q44 Did your child's speech-language pathologist facilitate your child's ability to meet another
individual with a tracheostomy tube?
o Yes (1)
o No (2)
183
Q45 Have you found any specific therapy activities that the speech-language pathologist has
used to be especially beneficial in addressing your child's emotions specific to having a
tracheostomy tube?
o Yes, please explain: (1) ________________________________________________
o No (2)
Q46 Has the recent COVID-19 pandemic negatively impacted the emotional support you and
your child currently receive?
o Yes (1)
o No (2)
o Please explain: (3) ________________________________________________
184
Q47 Has the recent COVID-19 pandemic affected the delivery of the speech-language therapy
services that your child receives?
o Yes (1)
o No (2)
o Please explain: (3) ________________________________________________
Q48 Is there anything else that you would like to share regarding your experiences working with
a speech-language pathologist?
o Yes (1) ________________________________________________
o No (2)
185
Q49 Would you be interested in an opportunity to share your experiences further in a 5-10
minute telephone/Zoom interview? If you are interested in a telephone/Zoom interview, names
will be kept confidential and will never be connected to the above data.
To be eligible to participate in the follow-up interview, these three criteria MUST be met:
Inclusion criteria MUST include the following three items
-your child currently has a tracheostomy tube
-your child underwent a tracheotomy in the first 2 years of life
-your child must be five years or younger
o I fit the criteria, please email me with your contact information on how you would like to
be contacted at [email protected] (1)
o I do not fit the criteria, but would like to share more. Please email me with your contact
information on how you would like to be contacted at [email protected] (2)
o No (3)
Q50 Thank you for taking the time to participate in this study. A summary of the results of this
study will be available in spring 2021. If you would like to view the results, please contact the
researcher using the email below. Again, all participants’ names and data have been kept
anonymous throughout the entire research process. Your participation has been greatly
appreciated.
Researcher’s contact: [email protected]
Advisors’ contact: [email protected] or [email protected]; or [email protected]
186
Q51 The following materials may be beneficial for your child and family to adjust to having a
tracheostomy tube, along with useful materials and information:
Books for parents:
Special by Melanie Dimmit
Can't Breathe by Laesa Faith Kim
Children's books:
Hiya Moriah by Victoria Nelson
Gerry the Giraffe and his Super Awesome but Sometimes Icky Tracheostomy by Rebekah
Foguth
Tracy's Tracheostomy by Wendy Hall
Channel your Inner Superstar by Wendy Hall
The Able Fables book series by Dr. Nicole Julia
Film:
Float on Disney+
Stuffed animals and other toys:
Tubie Friends
Toby Tracheapuppet
Toby Tracheasaurus
Toby Tracheasaurus Friends Coloring & Activity Book
187
Extra helpful tools:
Patient Education Handouts on the Passy-Muir website
TRACHTOOLS App developed by Passy-Muir
End of Block: Default Question Block
188
APPENDIX D: PARENT INTERVIEW MODEL QUESTIONS
1. Informed Consent for verbal agreement – including recording the interview
As a follow up to the survey that you completed online, I am conducting some semi-structured
interviews with parents of kids with tracheostomy tubes to allow parents to further expand on
their experiences. As you recall, the goal of this research study is to investigate parents’
perceptions of the amount and types of counseling that parents and kids have received from
speech-language pathologists when the child has a tracheostomy tube. No identifying
information will be shared in this study and I will have no way to link what you say within this
interview to your survey responses. Your participation is voluntary, and you have the right to not
answer any questions and to end this interview at any point. In order for me to ensure I do not
miss any information you say, with your permission, I will be recording this interview and the
recording will be deleted once I have transcribed what you say. In that transcription I will be sure
to delete any names or personal identifying information you may give me. If you provide any
dates, when they are transcribed, the transcription will only provide month and year to ensure
your confidentiality and that of your child. Can I confirm that you are agreeing to participate in
the research study at this time? This interview will be fairly short, but you are welcome to
answer all questions to whatever length you would like. I am also happy to speak with you more
about any other experiences or feelings that you have had throughout this journey or expand on
my research study.
2. Just so our conversation can flow a little bit easier, can you tell me your child’s name?
Just as a reminder, his/her name will be modified after this interview.
3. Demographic questions:
a. How old is (name)?
b. What is (name)’s medical history and how did that lead to him/her having a
tracheostomy tube?
c. (If this has not been answered above) When did (name) get a tracheostomy tube
and how long has he/she had it?
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d. How does (name) communicate with you and others?
4. Can you tell me how you have learned about what a tracheostomy tube is and how to take
care of a child with a tracheostomy tube?
a. Have you continued to get information as your child has gotten older or did you
get all of your information at once?
5. Was there anything you would have liked to have known before your child received a
tracheostomy tube?
6. Can you tell me about what emotional and social support you and your family received
during this journey?
7. What are things you would want to let a Speech-Language Pathologist know about
working with a kid with a tracheostomy tube, or specifically your child?
8. Is there anything else you want to share about your child and your family’s experience
during this journey?
9. Do you have any final words of advice for other parents with kids with tracheostomy
tubes or for me as a future clinician?
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APPENDIX E: HUMAN SUBJECTS RESEARCH COMMITTEE (HSRC) APPROVAL
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APPENDIX F: RECRUITMENT MESSAGES
My name is Meghan Botsch, and I am a senior Communication Sciences and Disorders major at the College of Wooster in Ohio. I am currently working on my Independent Study thesis project – a faculty-mentored research project. With my advisors, Donald Goldberg, Ph.D., CCC-SLP/A and Joan Furey, Ph.D., CCC-SLP, I am investigating the interventions provided and the counseling techniques used by Speech-Language Pathologists (SLPs) to address the emotional impact for pediatric patients receiving tracheostomy tubes and secondly, to investigate caregivers’ perspectives of the counseling methods provided by SLPs to pediatric patients and their families – including bibliotherapy, educational products, group therapy, and open ended questions. I am looking for practicing SLPs that have provided or currently provide services to pediatric patients with tracheostomy tubes.
OR I am looking for parents (or family caregivers) of children who have had or currently have a tracheostomy tube.
I am writing to invite you to complete this survey. It will take about 5 to 10 minutes to complete. The results of this study may help speech-language pathologists better understand how counseling is perceived by parents who have children with a tracheostomy tube, in order to help professionals best support parents and families. Feel free to forward this recruitment message to other SLPs that you know who have worked with or currently work with pediatric tracheostomy patients. See the link below to access the survey: https://wooster.co1.qualtrics.com/jfe/form/SV_4V0ldf8PY3myyVL
If you have any questions or concerns, please contact me at [email protected] or my advisors at [email protected] AND [email protected] or [email protected]. Thank you in advance for your participation and help!
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APPENDIX G: SURVEY ITEM: Q54
Do you have a favorite open-ended question that addresses your client's emotions?
• n/a, the majority of the patients are 1-2 years old and can’t consistently express this yet
• “Tell me more about that” (after identifying emotions)
• No, no (n=4)
• Not for EI kiddos :)
• no, most of my patients are young infants
• the majority of pediatric patients I see are either infants/young toddlers with chronic lung disease who have never left the hospital or trauma patients with significant cognitive/communication impairments from the trauma
• Many of the children I work with are at a preverbal level.
• How do you feel about your tracheostomy?
• The majority of my patients are very young children that do not yet have the language skills to answer this type of question.
• What matters most to you? (to parents - given most our patients are young, non-verbal, with global neurodevelopmental deficits along with trach/vent
• not really
• I work with birth to 3
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APPENDIX H: SURVEY ITEM: Q48
Is there anything else that you would like to share regarding your experiences working with a speech-language pathologist?
• Our child is not verbal
• My son is only 20 months old (16.5 adjusted) and has been quarantined due to flu/RSV and covid. Most of these therapy questions are not applicable either due to his developmental age (I.e. feelings about having a trach) or inability to leave the house (I.e. group sessions/meeting other kids with trachs)
• Speech- language pathologists I dealt with while inpatient and currently seem to provide the very basic knowledge/advice for parents and then it is up to the parent to do further research to expand on what they provide. If I solely did what the speech-language pathologists provides my child would be a lot further behind than he is.
• I don't feel we have ever gotten enough speech therapy
• We have had some good experiences and some horrible ones. I feel that it takes a special breed of SLP to consider all aspects of the child. My child also has visual impairments but therapist offer AAC with no icons because well I didn’t have time to make one, didn’t have one or do you want me to use one. Or use something to tiny for him to see. Also my child has both communication issues but also oral feeding needs. Both deserve support
• My kid is normal intelligence and speaks completely intelligibly with a Shikani speaking valve. He used exclusively asl, then pecs, then got the physical airway ability to speak at age 4. His speech was normal enough by age six. At no point have we ever seen an SLP who had any training or experience with trachs or craniofacial syndromes, we were completely on our own for all of this.
• Most gave up on us. Weren't trained in how to help those who weren't toddlers/elementary age.
• We have had good and bad SLP. Big issue is when they assume my child is behind cognitively or assume I am not playing an active role in her care and needs. Dumbing things down frustrates both of us and my daughter is 5.
• My son received therapy from multiple speech pathologists. One during his hospital stay, one at home when he qualified for early intervention, and another with the school district. He spent the most time with the Early Intervention therapist, and they were the most thorough and helpful in all aspects.
• Our experience with SPT was solely for oral feedings as my child was 5-13 months while receiving therapy. We were limited due to virtual sessions because of COVID but received adequate interventions throughout the duration.
• Very uncomfortable experiences with SLP and my trached child
• Our experience with speech was extremely frustrating. Their perception was that “trach babies just don’t eat or talk” and the most certainly do!
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• We have met with a SLP at our hospital a few times in regards to a speaking device and have received so much more instruction and help from her in a few sessions than our home SLP. We do the same thing every session: read a book, blow bubbles, sing songs and "open eggs" over zoom. I got a lot of push back when asking for "more". Ie picture communication or speaking device so had to seek out other options on my own and we have learned do much outside of our birth to three SLP. It's unfortunate that we feel like he's not getting what he needs from ours but we are grateful other options exist and have helped us give our son more tools to thrive with communication.
• It is somewhat uncharted territory for most speech pathologist in the states programs. Dealing with a child with a trach is very complex, I think it should be it’s [sic] own speciality [sic]. The level of oral trauma trach Children have will be very different from other kids with speech delays/disorders
• they do not work with mouth physical therapy to promote mouth movements. all have been on the well what do you want to work on rather than education of what there is to do
• Our SLP is supposedly the most comfortable providing therapy to trached kids in our small town, but she is clearly not comfortable.
• My wife has done most of the therapies with my son - something to keep in mind :)
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